Discourse.net

Thanks! I have been shopping this around the holiday partys. The SF mid pen area is a hot bed of medical organizations and connected people. Hope it has a basis.

This sounds great on the surface, but how many years, decades until this gets into human trials.
There are literally hundrends of "cures" that work in the NOD mouse. So far none of these have proven effective in humans.
When will there be a cure for Type I diabetes? When will the suffereing end?

Makes me wonder why we bother with the mice. Perhaps we should cage big pharmaceutical company executives and use them for experiments. I'd love to see them function without islet cells. At least we'd get an idea of what a particular treatment would do in a human model AND an executive would, for a change, earn their keep. No need for golden parachutes either.

I've been a Type 1 for 27 years and I have to take over 15 shots of various medications a day (two different types of insulin and pramelitide) and test my blood sugar at least ten times a day. I also have the joy of playing Russian Roulette behind the wheel of my car to see if I can get home in the evenings from my job without a hypoglycemic attack. Fun, fun fun. Insurance won't pay for a pump (and it's $8,000 I don't have to buy one outright, not to mention the tubing, the disposable needles attached to the tubing and so on). This disease has robbed me of many, many things over time and the one of the first things to go was my idealism regarding those who are supposed to be helping us.

A cure? And end to suffering? Don't make me bloody laugh.

I'm not talking about doctors - their hands have been cuffed by insurers, cost management programs and a crippling fear of litigation. I'm talking about the people creating the therapies - the drug companies.

Pharmaceutical companies, at least the big ones, don't really want to end your suffering, kiddo. They SAY they do (or at least, their TV ads to, what with all of those smiling people who look as if they are either in the middle of some dazzling scientific breakthrough or who look as if they've just been cured by the laying of hands and are running around without a care in the world). But really...They aren't even honestly looking for one... not seriously anyway. They could care less. What they really want is the next Viagra or the next Rogaine, because impotent, balding middle aged men earn more and can pay more in drug costs than five-year-old children with Type 1 diabetes.

While there IS research going on at major hospitals and universities, you have to have investment in order to turn any of these discoveries into anything useable. Cold, hard cash. If there was a cheap and easy cure for Type 1 diabetes, pharmaceutical companies and others with a financial stake in making insulin and medication for Type 1's wouldn't be able to make any more money off us. Or rather, they would lose the ability to bill the government and insurers for the true cost of our needles, our insulin, our pumps and a whole range of pills to treat the inevitable symptoms of hyperglycemia, etc. So there is really no motivation for Big Pharma to shell out investment money if it deprives them, in the long term, of customers.

If I seem deeply cynical, I am. I expect to die with this disease for no other reason than the fact that so many potential forms of treatment (in the time i have had this nightmare) have either been discredited by repeated testing (islet cell transplants), are relegated to other countries (namely Canada, Great Britain and Australia) or have no government funding (stem cell research) and must scrounge for capital. I've watched my father lose an eye, a toe to amputation, his sense of balance to a series of diabetes related strokes in his late 40's and his overall health because of Type 1 diabetes. He's 62 now, has had it for over 40 years and he looks like a 90 year-old man. My stepfather's late wife died of this at the age of 32, after she had a miscarriage and a heart attack. I was diagnosed in 1980 and my mother was told that if I was lucky, I'd see my 25th birthday. All the while, every doctor and endocrinologist I've seen has either told me "Well, we're working on it, try to be patient." or "Hey, a cure is just around the corner - we're really close".

Yeah, yeah... hot pepper compounds... sure. Whatever. Last year it was rogue spleen cells, the year after that, islet transplants. The list goes on and on and on. And of course, there is always the Holy Grail of Stem Cell Research, which is supposed to cure EVERYTHING, including baldness and athletes foot if given the chance, which the fundies won't let happen (more bad PR that pharmaceutical companies don't want to deal with, hence the lack of investment). Pardon me if I fail get all quivery and excited about this latest discovery. Yippee, wahoo... wake me when you have something tangible to report, you know, something that changes the color of the non-alcoholic beer in my mug. I also fail to see how knowing about the role of the nerves around the islet cells will help, since developing therapies using nerve cells is also in its infancy. 'But it will help someday' I hear people say. In my book, someday = never. I don't doubt that there are well meaning, small pharmaceutical companies, probably founded by those with children or family members who are afflicted who are trying and have a more altruistic intent to their research, but in the end, those companies will be bought out by the big boys and whatever treatment they were working on will be warehoused because bringing a real cure to the table using the data wouldn't hold up under a cost-benefit analysis. The world of business abhors risk and biomedical companies are some of the riskiest ventures around. As we all know, large pharmaceutical companies are first and foremost businesses, not charities (it's in the fine print attached to their annual shareholder statements). They won't do anything unless they're sure that they'll make their investment money back and then some. They also need to make sure that what they're developing doesn't kill anyone, which means even more cash that they have to lay out for testing. Their lack of enthusiasm for finding a cure is understandable... as the Hollywood mob bosses would say "It's not personal... it's just business".

Most diabetics, statistically, are Type 2's, which in many cases is entirely preventable by getting exercise and eating something other than fried food, fast food and Ding Dongs (what several of my college friends subsited on - four now have Type 2 diabetes). Not to downplay the Type 2 diabetes epidemic, but I see pharmaceutical companies spending more time developing new drugs to feed Type 2's, simply because it's easier and cheaper to come up with another way to package metformin or combine it with something else than it is investing in stem cell or gene therapy treatments. I can guarantee you that coming up with a solid cure for Type 1 diabetics (who tend to disappear from the fundraising literature as we age, unless we're some kind of twenty-something athlete or famous - we're just not cute enough to bring in fundraising dollars after the age of thirty I guess) will be much much more costly (because there are fewer of us) with less of a guarantee of any returns. And speaking of returns, insurers (who are a whole 'nother group of executives which will find themselves surprised at where they end up after sloughing off the old mortal coil) are less likely to want to foot any bills for experimental treatments, even if, in the long run, it meant a cure for Type 1 diabetes. They are also less likely to want to deal with involving children in any kind of testing to find out why Type 1 strikes the under-40 populaiton disproportionately. Lawyers, you know.

Which brings us back to the NOD mice. Safe to use if you want to appear you're doing something useful without going through the trouble of finding and approving human trials. Lucky little buggers. Even if the ultimate fate for these guys is the dissection table after some experimental therapy normalizes them, at least they get to experience life without Type 1 diabetes. The same cannot be said for Type 1 humans. So you dump money that you can't really spare (gee, insurance and medical costs are high for Type 1's, especially if you want to try to stave off the blindness and the kidney failrure and the neuropathy) on the various JDRF funds because they seem to be the only group that gives a rat's... well you know, about this form of the disease. As you get older and the complications begin and with no cure in sight, you try not to care too much about discoveries in mice because they don't translate into anything for you, just funding and grants for the pharmaceutical companies and the universities conducting the research.

And in the end you just stop believing you will ever see a cure, because for every promising discovery there is an overwhelmingly massive YAWN from the pharmaceutical industry as its executives cash in their stock options and count their millions made from selling us 'ways to manage your diabetes'. Manage our diabetes? Hah. They will manage us into our graves. After conveniently draining our bank accounts.

I dare, DARE any of the supposed biotech hotshot entrepeneurs out there to dispute ANY of this. Prove me wrong - I double-dog dare you. There is money to be made by pharmaceutical companies in keeping us sick, and so we remain diabetic. And overwhelmingly cynical regarding an 'end to our suffering'.

That was a GREAT POST! Well, if they can't cure us, I wish to God they would make euthanasia legal in the U.S. so I could end my suffering WITHOUT the mess of firearms.
Here is to "the cure"!

Well that was a great post! I have only been diagnosed for six months now (although I say only it does feel like six years) Wow I have so much to look forward to. Right now I want hope, I need that hope and everytime I hear something I think " Great one step closer". I just cant even picture myself having this for 10- 20 years longer, ten, twenty weeks is too bloody long!
I think I would be OK with diabetes type 1 if it was just the needles and the BGL's check but it isnt just that, its the hypos and the complications.
I want them to stick me with this pepper crap, I want an islet transplant, I want anything that will help stop me losing a leg or my sight or my kidneys or my life!!!!
I wish I had type 2, I would walk all day and eat lettuce for six months if it meant that I was given a choice, I never got a choice!
My question is if they are not going to ever even really try to find a cure, why run all these trials, why put this money into research. It just cant all be that bad, wouldn't the first company to find a cure make money? Wouldnt the first company to design a closed loop artificail pancreas make a s@#$^ load of money?
My last question is if we are only ten percent of the diabetic population and we are such a drain on the health system and the government does subsidise some of our costs (here in Aus most of our cost) then wouldnt it be more beneficial for them to cure us and make money off the type 2' s, cause can I say I am ok with that!

Still Type1: There are times, in my darker moments, late at night, when thoughts that would get me labeled a 'eugenesist' or a 'Nazi' creep into my brain. I'm careful how I voice them as well. Euthanasia is not the answer, at least not currently. But it wasn't so long ago that we were considered disposable: before insulin was available, it was recommended that well-to-do children be placed in special 'homes' to die, as it was deemed too terrible for the mothers to watch their children' literally shink and starve to death before their eyes. It was not an easy death either. Witnesses interviewed for a recent book on the subject spoke of being able to smell 'the sweetness' hanging in the air around the bodies of emaciated children slumped in the hallways of what was essentially an asylum.

Insulin changed all of this. We now get to grow up, have families and pass down our flawed genes to another generation, who then manifast Type 1 and start the whole cycle all over again. While I can't sit here and tell every Type 1 diabetic that it would really be a good idea if they chose not to pass along what is coming to be understood as flawed genetic material, I have gone so far as choose not to be a mother. I've told this to my husband and while he would like to be a father, the risks to me physically far outweight my desire to have a baby. Because it runs in the family, I have a good chance of giving birth to a child who will present as a Type 1. I refuse to do this to another human being. It is my personal decision not to take the chance of bringing any more potential Type 1 diabetics into the world. Harsh? Yes. Am I sitting in judgement over someone else's potential to be born? Absolutely. Am I doing my utmost to take responsibility to prevent the suffering of another human being? You betcha. I love my potential children too much to do this to them. It was too late for me - my father came down with this as a 28-year-old and I was unfortunately already on the way. But at least I can spare another generation of my family the anguish of this disease.

In a way, we might be moving toward a time when Type 1 diabetes will be a thing of the past, but not because there is a cure for it. Via the Teddy Trial-Net study (looking at relatives of type 1 diabetics to find the genetic markers for type 1) geneticists are trying to get a fix on predicting who will get Type 1. The Barbera Davis CenterWe now have the technology to choose our children's genetic makeup via in-vitro fertilization. Imagine a world where embryos could be screened for this, where even couples at risk for bearing a Type 1 child could edit it out of the family tree by choosing an embryo that did not carry the flaw, weeding out a potentially devastating disease for generations to come.

Are there drawbacks to this? Are there ethical and moral issues about deciding that the diseased no longer have a place in society? That they are expendable? Of course. Even ith this disease, my life has value, even if it is only to my family and friends. But given all of the emotional, physical, financial and societal costs of raising a sick child to both the average family and to society as a whole, I see a day coming, sooner than later, when the above scenario will be welcomed with open arms. It's already happening where the selection process is for incurable and untreatable diseases like Tay-Sachs and some of the more rare and horrifying birth defects. Families that are suceptible to certain genetic cancers are screening embryos as well. Again, as I've said before, this will occur because people want their children to be healthy and in that respect, I honestly think more and more people will choose this route if they can afford it. There is a large and growing market for this and those willing to spend big money on the process of selecting embryos free of potentially damaging genetic flaws will pony up the cash to have diabetes-free children. As I have said before, the business of healthcare in the United States is not about what is is 'right'. It is about what makes investors and pharmaceutical companies money. 'Right' is a moral and ethical judgement and is subjective. The business world, at best, gives lip service to this and goes about the business of cashing in by providing what people REALLY want (cosmetic surgery, impotence and obesity treatments), not what they say is 'right' to want (cures foir childhood illnesses).

Rachel: I am REALLY sorry about the diagnosis. This disease sucks and I honestly wish there were some way of simply eliminating it. Unfortunately, market forces, and the public's generally short attention span are not on our side. I wish it were different. but as my grandmother once said, 'If wishes were horses, then beggars would ride." It's going to take more than wishes to do something about this. It will take money... Lots and lots of cold hard money in the hands of the correctly connected people, because that's the way the world works.

It would take someone who had the collective political will of Franklin D. Roosevelt, Huang Di and Gengis Khan, and a health care crisis so large that it brought the whole system to its knees in a matter of weeks to get a stem-cell bill through the U.S. Senate with a veto-proof margin (I chalk this up to having to simply wait out the next two years while our Cretin-in-Chief finishes his term). It would take the fundamentalist idiots in my country to have a collective brain transplant and to stop trying to oppose federal funding for research. It will take filthy rich people with wads of cash lying around collecting dust willing to fling large sums of unsecured money at researchers. It would take researchers who are brave enough to go beyond the 'white mouse' model to propose human tests of some of these cures. I used to belive in these things, but then, as a kid, I also used to believe in fairies and unicorns and it's a hard day when you realize that the world simply doesn't care unless you have enough money to MAKE IT CARE about you.

Honestly, the bravest people I've seen in this fight so far are the Type 1 diabetics themselves, who are willing to undergo any kind of experimental testing out there, no matter how painful and no matter how deadly the potential side effects, just to have a shot at a day without needles (the pun is fully intended). Dr. Faustman (she of the rogue spleen cells) has lined up 600 Massachusetts adult volunteers for human trials, which have yet to find funding. 600 type 1 adults who are willling to risk their bodies to see if her methods work in humans. She's also with a university, so there may be a remote chance for a cure with her method before Big Pharma purchases the rights to the cure and hides it away. Gotta sell that insuliin to those cute children and those desperate parents, right?

But don't dispair too deeply. Be of good cheer, for you are an Aussie. You live in the land of marsupials and thoughtful politicians and other strange and exotic life forms, where health insurance isn't the drawing line between who receives insulin and who does not, who lives and who dies early from complications. Thanks to having a collective government that was willing to place science over the religious sensibilities of zealots and provide research funds and overturn bans, you are likely to benefit from potential cures underway in Oz long before those of us in the States. The only thing Americans can do is to have the JDRF and the ADA keep throwing money at weasely politicians and scarce researchers and hope that they aren't outbid by the pharmaceutical and insurance companies for their representative's attention. The only current lawmaker I have any REAL respect for is Diana DeGette - her motivations are delightfully transparent: her daughter suffers from this and diabetic Coloradoans got to see just how pissed she got when His Holiness Bush II vetoed her first stem-cell funding bill. If the moron in the White House knows what's really good for him he'll sign the bill when it crosses his desk later on in the month. Nothing like a mother's anger and determination to get something done, eh?

And yes, they are working on an artificial pancreas, as they have been working on it for over 20 years now. I'd have expected some real progress by now, but nope, nothing so far, sorry. I'd rather have replacement cells my body won't reject that will regulate my blood sugar without having some machine hooked up to me and for which I have to fork over half my yearly paycheck because insurance thinks its too risky to cover. Also, understand that for an artificial pancreas to function as a real pancreas, the mathematic calculations programmed into it would have to be incredibly complex and nearly perfect, to eliminate the potential for fatal hypos in sensitive individuals. We are not there yet. We may not ever be there, unless the liability and business risk can be completely eliminated.

What I'm really curious about is whether or not adult Type 1 diabetics, or any diabetics will ever really get pissed enough to get together as a hardline voting block in whatever country they're in to make any kind of difference as far as an organized and government funded hunt for a real cure. There are enough diabetics in the U.S now to constitute a political party, if they so chose (There may be more diabetics that Libertarians, actually.... hmmm). Lord only know what might happen if diabetics in India organized - it's where most U.S. companies test therapies for Type 2 diabetics (we've even outsourced our medical testing - I'd laugh if it weren't so serious). It's food for thought. After all, we can now survive childhood. If you live long enough with this disease to earn the right to vote, you should use it, early and often as they say, to make sure that those in charge of doling out the money for research are in you rcorner, not Big Pharma.

CJC, thanks again for the comments. I would never propose to apply euthanasia to the entire population of people with Type I diabetes. I am hoping that as a individual this choice will be available to me, when the time is right.
Having endured this disease for 16 plus years, I have seen many many individuals succumb to this disease, some by their own hand. The youngest of these was 26
I too have elected NOT to pass this horrible disease on to another generation. If others had the courage and intelligence to make the same choice, perhaps we would see the end of this disease after the passing of several generations.

On Faustmans research I am very doubtful that this will have any effect on the disease.
BCG has been tried several times both here in the U.S. at the Barbara Davis Institute and in Israel with no effect.
Funny, I first contacted Faustman just after she published her work in the July 2001 edition of the JCI. At that time Faustman responded saying that human trials would be possible by 2003, obviously that did not happen. What did happened is the work has been diverted into creating a machine to detect levels of “bad” T-cells in the blood. She has also managed to virtually guarantee a paycheck for many many years to come. Many/most of these Ph.D’s are funded by grants. No grants = no work = no paycheck.
She is also a founding partner in Keel Pharmaceuticals. http://www.keelpharmaceuticals.com/

Interestingly Keel is hard at work at curing autoimmune diseases. I’m sure you can figure out the rest.

StillType 1: Nice to know Faustman sold out. I have to wonder what the going rate for a soul is? Next time you contact her, ask her what her price was. I'd love to see her reaction.

Of course, there are still the guys in Canada with the chili cure. Maybe they can bottle it and send it with a six-pack of beer, cause it' it's one thing Canadoes really well, it's the beer. Maybe Type 1's can figure out how to sprinkle it over nachos. Just on a lark, I told my primary care physician about it and he said "Well, it can't hurt - try eating some. It does tend to work its way around the body." I wanted to beat my head agains the wall - then I began wondering if I could find a purified form of the compound, a really big needle and trial the damned process on myself. Feh - with my aim I'd hit my liver and then both curing myself AND drinking beer would be out, LOL.

This development doesn't surprise me really, though it does deeply disappoint me. Yay, more potential research down the tubes, more money raised by desperate parents dumped down the black hole of Big Pharma. I'm seen at the Barbera Davis Center. The staff rotates, as it is a teaching hospital. The last nutritionist I saw was just so cute, with her insulin pump and a big bright smile. She gave me the email address of a guy who does nothing but treat depression in Type 1 diabetics. I'm considering talking to the guy, but I have a sinking feeling about what he'd say... most counselors are just full of happy platitudes and most of them sound as if they've gone through the corporate movitational speaker training boot camp. Spare me. Unless you live with this and the complications and understand the scope of the difficulty of dealing with this disease, keep your platitudes to yourself. I was seeing a typical shrink, who advised me that the best way to deal with my anger and depression was to write a book, to help other sufferers cope.

You know, I told her as I left her office for the last time that the only thing that would really 'help' us was a cure for this nightmare. There are already enough books out there about Type 1, though admitedly there are few that deal with it from an adult POV. I just don't think that anyone in the general public who isn't affected by this would care enough to read it, and the tone of my hypothetical book wouldn't be one of 'we have to keep hoping and keep a positive attitude.'

Mine would be about forcing drug companies to do something other than bleeding sick children and their parents financially dry. It would be about how to force insurance companies to cover us, about how to motivate doctors with something other than a payckeck and about how to hold the U.S. and other government entities accountable for creating the healthcare environment we currently enjoy.

Remember, this is all about economics. Drug companies make money off of treatments, not cures. They will only put moeny toward curing sometihng if there is money to be made, or the cost of not curing it would bring society to its knees, or if some government agency forces them to undertake a cure for the public good (Wher is Stalin when you need him, anyway?). The Type 2 epidemic may well do that - in the next 20 years, as the boomers begin to make huge demands on the health care system and the number of Type 2 adults explodes, it will be very interesting to watch the system collapse. I'm planning on kicking back and watching the show with a near-beer and a Lean Cuisine pizza.

As for suicide as a way out of dealing with this disease - I figure that when the time comes, and my eyesight, my kidneys or some other troublesome body function becomes too difficult for me to deal with, I'll take care of things. However, I'm also far too much of an ornery bitch who Is sick and tired of the way our healthcare system works to go down that easily. The latest person I've 'enlightened' about how the pharmacetical industry is one of their salespeople, par tof my study group. She was appalled when I showed her the numbers and brought up the recent aticle inthe WSJ about how Big Pharma is taking donations from the JDRF, almost as bribe money to do anything for Type 1 kids.

I've also made stipulations in my will that my body will be used for medical research. Most of the time cadavers come from among the indigent. If there is any way that I can show these young medical students what the body of a mature adult that has been ravaged by Type 1 diabetes looks like, if it leads just one of them to do something to help us find a cure after lookking at the truth of this disease rather than looking after their own bank account, then donating my body will have been worth it.

I do not, however, recommend that you check out yet. There have been times that despite my overwhelmingly cynical nature and dark view of human nature, I have been surprised at the good that people are capable of doing. Amazing things can be achieved when they are motivated less by the bottom line and 'what's in it for me', or by increasing their market share, than when they put aside monetary goals and do something simply because they must, because it is the right and honorable thing to do. Those times are rare and seem to occur only during crisis. For me it boils down to simply being meaner and more stubborn than the disease.

Tell us more about stem cells from a donor that might help cure or at least help us control this aggrevating disease.I hope for a cure or something to help some of the suffering we have to go thru. Please send me all the information that involves type 1 diabetes . Send to 711 Westmead St. Dothan, AL. 36301. I hope to here from you in the future soon.

I have seen a lot of good posts and comments. I am a type 1 diagnosed at the age of 20.. Now imagine that right before I turn 21. There goes my big bash at the bar and all the great food right down the drain. I just thank god that I am still alive today because I did not know I had it and I had a blood sugar level of 1100. Yeah now thats high so still thanking god. Also President Bush is the one who is an idiot in office and will not help cure us with the help of stem cell research which may I say can cure type 1 diabetes along with many other things. HOwever.. Scientists predict a full cure within 10 years and ya know what.. for them to say a cure will come out like that in a given time period gives me hope becasue 30 years ago.. thats like saying there will be a cure for cancer and we all know that isn't coming anytime soon. I believe in hope and I live life everyday regardless of this horrible disease and if your gonna go out in this world.. better make sure you go out on top and thats all I am gonna say about that.

new drugs used in treatment of D.M

What happened to this group? I have to admit, I am only a 2 year diabetic, but I am 21, have the occasional beer, live a great college life, and inject everyday as well. I don't like Diabetes, I wish there was going to be a near future cure, but talks of suicide and government bastards and bigh Pharm out to get us? While I am not going to be unrealistic, yes, it is in their best interest not to cure us, but look at what we have!!! Not but 20 years ago, insulin pumps were major medical devices on carts, now they are in research of some the size of a band-aid, they are looking into an artifical pancreas, and developments have come along to disguise the fact, sometimes from myself that i have type-1. Yes, there are people who dont give a rats ass about us, but love our money, but there are also people such as the Ford's who are very wealthy and have children with type-1. There are so many supporters and well-wishers for us that when I saw my friends run for me and so many others show up for the run for a cure, I about wept. Givingup on humanity is giving up on ourselves, we are no lesser people than anyone else. I didnt read all the posts but I was disgusted on how so many people are just giving up, not fighting for answers (I check google news every day) and from what I have just seen from the past 2 years, a cure may not be comming, but a way to make life very easy and to control this very comfortably is already here with more advancements comming. Diabetes is curable and I can feel that each passing year will be easier and easier for me, not only with experience, but with new devices and information guiding my fight.

Good luck all, we are in this together!!!!!!!

i m 23 years old. i m a type 1 diabetic for 16 years. i m now goin to get married. S there any possibility that i can have sex and give birth to a child??? wat r all d complications.. Guys pls help me out.....

Hi dont know if all the people who posted will see this but I hope so. I too am a type1 29 yrs now and I
belive that I am being cured of this rotten disease. I purchased diamoxal from information on their
website micronutra.com two weeks before my wife purchased a book. "natural cures they dont want
you to know about" by Kevin Trudue at wal-mart in this book it said that there is a cure for type 1 "diamoxol" and gave the name of the Dr who ran the trial at the university of calagary. It was also according to
this book proclamed by the "asian diabetic society" the cure for type 1 diabetes. I have been using it
for about 3 months and have noted a 40% drop in insulin amounts. Please at least check it out

CJC: Bravo, diva. Your vehemence and passion sparked what had been too long a period of acceptance--perhaps I've even been apathetic. I would really like to encourage you to write and to publish what you write. You have a truly riviting voice that might just be what the US needs right now to get a fire under our politician's asses.

I've been living with Type 1 for four years now (diagnosed with both Type 1 and Multiple Sclerosis in the same month at age 24) and for the longest time I believed there to be no cure for either of my diseases. They were just something that I was going to have to live with--for the rest of my life. That's what every doctor kept saying to me. And I have been living with them. I rarely complain (but when I do I go on rampages), I try to eat well, my A1c tests are always right where they're supposed to be. I ride my bike in the summer and swim in the winter. I try to do what I can--what I'm told I CAN do. I inject, not only my insulins, but also a drug called Copaxone, once a day delivered through a needle that makes insulin needles look like a fine strand of hair, and that has seemed to stop the progression of MS. I've accepted these diseases as apart of myself. Yes, GORDON, I have the occasional beer, and do enjoy my life, and do want kids regardless of the cost it might take on me, but I've decided that I'm tired of waiting for someone else to solve this problem. What if we refuse to pay any more money to the sickeningly rich drug companies? What if there IS another option? How hard do we have to fight for this? What kind of a force could diabetics press upon the drug industry?

The other day, my boyfriend said to me, as I lay on the bed going through one of my monthy, or bi-monthly, periods of "poor me", "this absolutely sucks" and "okay, I'm done now--no more diabetes, you can take it away from me now--I'm toasted", he said to me "You know, there are cures. There's hope out there. I've been reading about new advances in technology..." and then he proceeded to tell me about the islet transplants. Yes, there are islet transplants and adult stem cell transplants, immune system repressions and bee venom injections.

Now I'm not naieve. I have heard from the time I was first diagnosed, that there were break-throughs right around the corner. "Ten years", yes, I've heard that as well. And I've had friends who had been type 1s for years and years and shuddered when they heard people talk of cures. It's so hard to believe that maybe there's hope, especially when I listen to NPR and I hear NovoNordisc advertising about their "dedication" to the cure for diabetes and what strikes me most is that they have been around for almost 90 YEARS!!! Only companies that make a killing in profits are ever around for 90 years. Dedication to our diabetic pocketbooks, is what they are. A doctor cousin of mine, an internist, earnestly told my mother and myself that a cure was, yep, you guessed it, ten years away. I know he believes it.

But though my boyfriend is now trying to discourage me (due in part to the stress that trials might evoke from my body) from attempting to seek out cures for this disease that is, yes, easier to live with than 50 years ago, but still frightening in its potential capacity to destroy a body, I am actually researching new possiblities. Primarily due to the new research from Canada. Tonight I read an article from December 2006 about capsaicin (hot pepper's active ingredient) and how they think that it might cure inflamatory autoimmune diseases for a period of time. That it might stimulate the body's natural insulin making processes.

(here's the link: http://www.canada.com/nationalpost/news/story.html?id=a042812e-492c-4f07-8245-8a598ab5d1bf&k=63970&p=1)

What was interesting to me was that there were theories that it might also cure multiple sclerosis. This is the first research that I've come across that included both diseases in it's potential to cure. That alone gives me hope that they might be on to something. The fact that both diseases struck me within such a small window of time might support their theory that diabetes is caused by malfunctioning pain neurons. Why else would I be struck with these at the same time if it weren't for some outside/environmental stimulus? (I mean, besides the theory that I sometimes have that God just hates me and is punishing me for all of my evil thoughts about people while working in the food service industry. I'm joking.)

So, yes, just like CJC, I think I might begin eating far many more hot peppered foods. It's also supposed to increase your libido--perhaps that will induce research support on the part of my boyfriend. I'm kidding--he's been there before and after my diagnoses and he's been nothing but supportive. I think he's just afraid that I will be let down by dead ends. Whatever. Anything's better than nothing, right? Hope is better than disparagement and I refuse to have anything but hope. Blind hope, hell no, but hope nonetheless. If we have to start fund raising on our own, apart from the ADA (whom is, by the way, giving a lot of money, time and research not to type one research, but to type two!), to create foundations for people who want cures. REAL cures and not the nonsense that our endocrinologists would have us believe--giving us inhalers, pens, trinkets and toys that the drug companies are peddling to us like shiny objects to an infant. I'm starting to think that the only people who should treat type 1 diabetics are doctors with type 1. I've had three MDs tell me that I really shouldn't want a pump because I'm still so sensitive to the insulin I inject--that I really don't need a pump at this juncture. I can only assume that the are inferring that I should wait until I have such brittle diabetes that in order to live, to SURVIVE, a few more years I need to get on the pump.

I've ignored their advice after doing my own research about pump therapy (pumps extend the quality and longevity of a diabetic's life) and am currently saving up for my whopping 20% of the bill ($2,00)of my pump (while I still have my student insurance). In the meantime, I'll be researching cures. Real cures. And though I am by no means rich (this year I qualified for the earned income tax credit), I am educated and driven. Now that I've gotten the impetus to move, I'm refusing anything less than a cure--regardless of what kind of funding it might require--I guess I'm going to learn how to fundraise.

Yes, it's tiring, this whole diabetes thing. Yes, I want to kick my endocrinologist in the shins when he tells me I'm testing my blood sugar too much. Yes, I want to throw my pen needles at people who snack casually and exersize without using a glucometer. But most times I realize that I'm a little bit more lucky that the guy who gets hit by a mack truck. At least I know what I've got and can take aggressive measures to deal with it.

We are alive. Let's let the drug companies know that. Let's be pioneers in this new age of medical industry. What seem like insane and ridiculous ideas about medical advancement today are the common sense and obvious logic of tomorrow. That, in itself, gives me more hope than I did a few hours ago.

I AM DIABETIC ONE, And there are so many of us that are surviving and not realLy living our lives like we should.we are tired of cold sweats ,waking up bouncing off the walls trying to get to the fridge for OJ or what ever we can grab! every 6 months (no matter how hard i try) blood test show that my body is getting worst! i am a single day of two beautiful daughters , i pray every night that they dont get it! then i pray for a cure,there are millions in this world saying the same prayer.i ran x-country and track in high scool and college and was riding my bike up to 3 hundred miles a week and traing for a marathon 5 years ago i got this horrible life changing desease, now i have to nice bikes sitting here with dust on the and old running shoes in the closet.I called to order my diabetic supplies and told the lady that i hope some day i will never have to call here again, she said to bite my toungue,because that would mean that she would be out of a job,I CRIED, please tell me its really not that way! JT

Hey JT...I know the feeling all to well and hi to all fellow diabetics....I've had diabetes now close to 30 years and believe you me there have been so many up's and down's and not just from blood sugars lol....but as we all know we are not promised a perfect life....so many times I've said why me LORD? But you know there must be a reason and I just have to accept the fact that this is my life and that if there is to be a cure in my life time then great...! If not then I will not let those who keep such a cure from happening rob me of what precisious time I do have here on earth with my kids, family and friends. I have a an identical twin who doesn't have these pain in the butt condition thankfully.
I was 11 yrs old when I found out I had it....I can remember all the days leading up to the day I was told I had diabetes...actually that very first day when I became so thirsty and couldn't quinch my thirst. But now I just enjoy the moments when I do feel good and let that be my happiness in life...don't get me wrong, I do have my bad days of feeling sorry for myself and just wanting to be done with it all...but I try my hardest not to let it last long...it is my Faith in GOD that has gotten me this far and he will always be my rock. I guess the best advice I could either give or that you may want to hear is don't ever give up and take care of your self to your best ability. I've only once have had a low sugar that caused me to actually pass out and go into a spasm...which I have no memory of since I was not coherent....and of course I've had highs that I'm embarrased about... I'm some what private about being diabetic until I get to know you...but having this has also enlighted me on other conditions that other people have to live with and I feel for them. Like my mom and dad always told me...I could have had something harder to live with and more restrictive then diabetes. When you think about it every one should eat they way we do...when we are eating the way we should lol...I wear a pump now and I would never go back to shoots...it has definetly made living with this so much better...i tried it back in 2001 but gave up on it after just trying it over a weekend trail with just saline running threw it...but since this past feburary i have been waering it and love it....i guess it was all in the timing....just wasn't ready to deal with wearing it then....but i wish i did...and i only have to stick myself every 3 days instead of the 5 to 6 times like before when i went on huma log and lantius and i take just a quater of insulin of what i use to take by needles and only take huma log or nova log same thing...lol....nova just cheaper then huma...i have to admit this is the first time in close to the 30 years of having it that i've actually got to talk to other diabtics about my feelings....i always wondered about joining a support group...i guess i just felt like that if i don't talk about it as much as i have to that it makes me feel more normal..what ever that is lol...well i'll shut up now and hope that i either helped or if anything i got some things off my chest as well.. i will definetly check in to see who has wrote more.... take care to all and best of life to each and everyone of you...maybe some us will make new friends here...oh by the way i'm in Deland Florida and i'm a 40yr young male lol....take care...Tommy :)

I do not have diabetes, but my husband and son both have type I. I recently attended a seminar held by a doctor who heads a research study at the Joslin Diabetic Center-Harvard of type 1 diabetics who have lived over 50 years with type 1 WITHOUT complications. There are hundreds of participants in the study, many of whom I had the pleasure of meeting. It was very encouraging to me that a person can live with this disease for a long,long time without complications. I wanted to pass along to all of you some of the reoccuring themes among all 50 + year survivors, complication free. Here they are: Good control, family support, daily exercise and positive attitudes. Kathy

WOW!!! this is the first time i have seen actual diabetics talkin about how it feels to live with this...this thing ... Usually its so called quacks carrying on about how lving with it is easy.... I say PPPPFFFFT to them.. I have had type 1 diabetes for 16yrs (im 28 now) in and out of hospital all my childhood, fell pregnant and had my beautiful daughter with major complications iincluding high blood pressure, neuropathy, cardiovascular disease and just 3 weeks ago they found a major blockage in my aorta whch was patched up with a stent... Doctors do the whole TSK TSK thing when they get my hba1c results (long range test) but im sorry it just aint that easy to live with.. I am the only one in my family with it and when I do have a bad day all i get told by everyone is ITS NOT HARD JUST DO IT!!!! Im raising my daughter on my own which is hard enuf without doctors appointments constantly, paying for so many meds etc etc... the hardest thing i have found tho is havin to say no to my girl when she asks me for some of the chocolate im scoffing down to get rid of a major hypo..lol Gee that little rant has made me feel a bit better... Im in australia and read in the paper that they have this new thing for diabetes, as usual i got all excited as i read on only to find that it was actually to PREVENT type 1... I swore and thought "well it aint gunna help me is it" Even tho i dont kno any of u i know what your goin thru IT SUCKS!! My daughter was born 2 months premature weighing only 3lb she is now a happy healthy 5yr old and have been told that she has a 2% chance of becomin diabetic.. Ive heard bits and pieces of the stem cell thing and all the other so called cures mind u over here they are spending so much money on heroin injecting rooms so the junkies can inject in a safe envronment... m sorry but diabetics need 2 inject to stay alive but hey lets make the junkies comfortable while they get high.. lol they are giving junkies free needles but we had to pay for a box of syringes to stay alive HUH how does that work?? Sum1 obviously kicked up a big fuss over that cos now we can get ours for free 2...ANyway good luck to u all and lets just hope sum1 pulls there finger out and cures all these terrible diseases soon... Erin xox

Hey Tommy

Your post was right before mine on May 20th. I'm the one whose husband and 24 yr old son both have type I diabetes. I so appreciated your honesty about having the disease and your feelings. It helps me to somewhat understand what it must be like living with type 1. I believe I will deal better with my husband and son now knowing what it feels like and be even more understanding. I praise God for your confessed faith in Him. My husband and son do very well with their diabetes. They both eat right, exercise, see an endocrinologist and do well with their diabetes, but I know it is not always easy. We all have crosses to bear. We only get one shot at this life, what a shame not to make the best of it. I know with God, you will have the best. Take care.
Kathy

Hello there
I have heard about the Asian Cure as proposed by a doctor at the Calgary University (Kevins Trudeaus book-Cures they don't want you to know about). Would anyone know more details about this treatment?

Thank you

Hello all,

I stumbled on this forum page while looking for information about the latest research into a diabetes cure. Some of the posts here seem disheartening. I wanted to point out that there is a charitable foundation working to raise money for diabetes research and getting human trials of possible cures. http://www.iacoccafoundation.org/index.html The Iacocca foundation appears to be a very promising organization. In fact I plan to donate a sizable amount of money to them in the near future. According to their research page

"Preparation for a Human Clinical Trial to stop the autoimmune attack in type 1 diabetes. Grant covers the first three years to develop an automated system and a new assay needed to accommodate the BCG Human Clinical Trial due to start in the fall of 2008."

I also think that diabetes alone should not limit you from any physical activity. On a weekly basis I personally run 9+ miles, hike 10+ miles (carrying 60+ pounds) I even plan on climbing Mt. Rainier in 1-2 years time. I think that's quite an accomplishment even for a non-diabetic. I used to not care as much about controlling my diabetes and I would constantly eat. I now excercise regularly and eat a healthy diet and have lost over 30 pounds since February. Since doing this my blood sugars are rarely over 200 and are usually in the 70-140 range when I test. Before I took control of myself I would rarely see a reading go under 200.

To add a bit more info, the Iacocca foundation has made a $10,000,000 grant to make possible human trials of The Nathan/Faustman Project, which was the work by Dr. Faustman described above.

http://www.iacoccafoundation.org/grants_diabetes_research.html

To me this seems very encouraging.

In a "Live" 1989 radio broadcast I heard a Director of the NIH claim that working in conjuntion with the VA, they had developed a cure for Type 2 Diabetes. He said that the study began under Ronald Regan because the burden of the disease was too great upon the American Society. The cure was subsequently developed under Bush. Testing for Type 2 was to be complete and to be ready by April 1993 and testing for type 1 would be beginning in a few months. I understand that type 2 was done first due to the volunteer DAV patients having better controls. It would have been the Republicans answer to socialized medicine. Nobody counted on Ross Perot being a schill for Clinton (2 duty free ports as payoff). Interestingly my contacts told me Bill was diabetic and his daughter was starting to show early onset. One of the first things Bill did was to close the lab and reopen it for AIDS research. My thoughts at the time was oh good, Bill will just deliever the cure sooner. On his second or third day in office, he received a package of pharmaceuticals and when the White House Staff Doctor demanded to know what they were, Bill threatened to fire him.

April came and went and the only word I could get was the Lab was closed. I never heard anything again until Bill ran for re-election. In his campaining he mentioned that the Democratic Party was dedicated to the cure of Diabetes which is more common in minorities and that he, Bill Clinton wanted to personally assure everyone that the Democratic Party was the Party for the Minorities. Hillary has mentioned the cure time and again in political speaches and she has tied it into the need to use aborted babies, fetal tissue she diminutes.

It was hard for me to take, the leader of my former party of choice had apparently murdered millions of people by witholding the cure but it goes further. In 1986 Hilliary was involved in the nation wide flu shot. My dad and I have little in common but work and we had both finished our semi-annual company physical within the same week. A week later the company let its employees go down and take the flu shot special at a local pharmacy. The nurse comment on how us large men needed a special dose so we had to get into a different line. Within a week we were experiencing flu like symptoms and at two weeks impaired vision and general neuralgia. We were tested again for blood sugar and his was 350 and mine was 395. In the previous glucose test less than a month earlier my glucose was 101 fasting 100 tolerance, Dad's was 100 fasting and 103 tolerance. My numbers indicate 6 million new cases came from Hillary's flu shot.

Finally after all this time I had to admit a good reason to believe the worst. Then a year ago the former manager of the NIH lab that was shut down, came into my business. He said the day Clinton took office the black suits came in and rounded all the staff up and told them to go home. As he watched, they confiscated all the paperwork and all the medicine. During Clintons term of office, all the researchers were denied Visas because they had classified knowlege. Then under Bush 2 they obtained their Visas and some went to England where even now they are trying to re-create the cure so he told me.

So I have to ask... Did the Clintons kill the cure for money, politics or to push for a cure that creates an industrial need for abortions? Could their evil genius include all three?

I believe the program was broadcast on KAVO radio from Fallbrook California after Easter week. KAVO had since been forced to sell out to a Mexican Salsa Broadcaster. They will not or cannot provide me with a copy. Anyway these are the facts and my conclusions I derived from them.

Again. this is my second post since march. I am still type 1 and had for about 3 years. I am managing, but I am living life like I would every day. I can't sti around and wait for this disease to kill me. I mentioned before, I am not sure if or when there will be a cure based on our stupid president and all the money being made off our sickness.. nothing new. Anyway to all the people out there who have this disease, just wish for the best and don't stop living. My life changed dramatically.. missed out on my 21st b day, lost 2 relationships, missed out on great desserts, how about the god damn list continues, but you know what.. I'll live every day like its my last and if I died tomorrow I'll be happy with the way I lived and thats all i'm gonna say about that. HERE IS TO THE @@@@ cure and hopefully someone out there steps up and puts stem cells to use.

hi I am 35 years of age and have type 1 juveinile diabetes high ,cholesterol ,triglicerides and thiriod disease. Im on the pump even with it I struggle to maintain a regular life style . i grew up playing sports in and out of school , working physicaly as a construction worker for last 17 years my body is battered and bruised but i am still expected to put a smile on my face when the insurance company mess me around on my mediction even though i pay 600 a month for my insurance for my self thhrough a cobra plan. iam fed up with all the crap we have to put up with just to live in this medicated society. the country we live in is a great country , and although i am thankful to live here i still think in less your totaly healthy you are screwed . they want to medicate you instead of heal you and i would bet they have a cure for just about everything but there is no money in cures . with that said all i can do is hope for something in are society to change but thats not going to happen any time soon. wish you all well and good luck

Hey everybody,

I just turned 20 on June 5th... And I found out that I had type one diabetes that night.... i got very sick from drinking and went to the hospital...I guess the 5 shots of tequila didnt help lol. But Im glad I found out I guess. it has been life changing since then. The doctors have me taking 5 shots of insulin a day. (one shot of humalog before each meal breakfast, lunch and dinner. As well as a shot in the morning and bedtime of humalin N) BUT every day I seem to get low sugar around like 40 does anyone have any advice for me or any tips?

THanks
Ryan

WOW! Many, many of you need therapy and FAST! I have never heard or met so many depressed, angry, senical, and mislead individuals in my life.

My husband WORKS for a pharmaceutical company for diabetes......he has for 8 years. My son was diagnosed with Type 1 three years ago....he is now 11. We are doing great! We have our challenges, and yes, if I could switch places with my son and take this from him I would....but to see what some of you have said about pharma companies and your outlook on life while living with your diabetes is just plain ridiculous!

God has a purpose for everyone of us. You have Diabetes....deal with it...take the best care of yourself as you can, and work at trying to help others (and yourself) live and beat this disease.
Why my son has this, I will never know...there is not one case of any diabetes on either side of our family as far back as we can go. Environmental causes...allegies to milk, antibiotics, long exposure to lethal airborne of ingested things are all likely the cause for most of you.

I do know that some day my son will see how he can help educate and encourage those newly diagnosed people.......he will instill HOPE in them and know that a CURE is ABSOLUTELY in his lifetime.....long before it's too late!

We are hopeful and have been told by many, many doctors that there will be a cure in the next 10-20 years....for those already dealing with it!

CHEER UP, people!!!!!!!!

And another thing......

Government is to blame for the drug companies and insurance costs.....it has nothing to do with being republican or democrat......it's overall GOVERNMENT!!!!

Same is true for oil companies....my dad worked for one of them too! Government!!!!!!

What does make a big difference is your attitude as to how you deal with your situation......your anger is only making you sicker! You cannot have a clear mind to manage your diabetes effectively if you are wanting to blame everyone else all the time.

Yes...it's normal to get angry and upset at your situation sometimes......but...you must go on.
God put you on this earth for a purpose....it's your job to find out that purpose.....at least your diabetes is treatable. If you take care of yourself you can live well into your Golden Years!!!!

I know several type 1's who are in there 60's and now 70's....they have lived with this disease for years....when it was really scary to have it......

Having type 1 now is better than having it 20 or 30 years ago......take heart.........you will make it!
Join a support group, talk to someone who is optimistic...these people live longer....because of their attitudes being so poitive anyway.

My son just started the pump...it's like staring over....but we are learning one day at a time!

Finally.......you should never close your eyes at night withour checking your sugar to make sure you are at a safe range.....if you have been at all active.....you need a long acting snack (15 carbs/protein bar)...and NEVER, EVER, get behind the wheel of your car without knowing your sugar level is safe.

Someone above mentioned "having the joy of getting behind the wheel of their car and wondering each time if they'd make it home safely"...that is inexcusable and absurd! Never, EVER drive without checking and even pretreating....just to be safe for yourself and other innocent people on the road!!!!!!!!!! Come on!!!!

Last thing.....in comment to above statement about the "Stupid President" and STEM CELL research

I am republian (probably why I am so optimistic)......and yes I support most of Bush's decisions.

I used to be against Stem Cell research......I totally understand why he takes his stance. Now that my child has Diabetes...I realize that this is the one piece of research that could expedite a cure...and this changes everything..... if someone in his family had a health crisis that called for this research he might also realize some things.....at the same time I am a Christian, and like him see the moral concerns....there is no easy solution to this.

I do hope that the future for Stem Cell research is approaching in our country...no matter which side is in office......as long as we keep this country safe, healthy, and FREE!!!!!!!

Look at all of the diseases that our country has conquered! Type 1 Diabetes is on the horizon too...wait and see!

Signing off!

One of my friend daughter is diagonised Type-1 diabetic today.The patiend is a small kid 11 year old girl studying sixth standard. How she should be tretaed . is there any permanent cure for that. After puberty will there be any chaange for cure. Please answer

Murugesh, she will need to be treated with subcutaneous insulin injections. This has been the only treatment for Type I diabetics for the last 80 years! And will continue to be the only treatment available to us in the foreseeable future!

Ah... I see my essay has parked some debate. Excellent. Now let's spark some action.

Gordon - I am very sorry you were diagnosed with this, and I am very happy that you are having a great time in college and have had no difficulties so far. However, I believe that you have yet to experience what those of us who have had Type 1 diabetes for a long time have experienced: the denial of a job because of the illness, the inability to obtain affordable insurance that will cover medical supplies and treatment of the order necessary to keep oneself functioning, the resulting high costs of out-of-pocket drug expenses. You have yet to find yourself stuck in a 9-5 job you hate because it gives you health insurance, something that as a Type 1 diabetic you will not be able to obtain independently, for any price. Ditto for life insurance - I was denied additional life insurance last year when I attempted to up the coverage amount on my employer-provided life insurance. Should I precede my hubby in death, he'll only be able to collect a year's wages as part of a death settlement. It seems all they will allow me to obtain is 1 x my year's wages, not the option of 5 x my years wages as is outlined in my contract. While this may not seem like much to gripe about, consider this: what if it was a child I was trying to protect as far as money to guarantee their future care and schooling? It's the constant, never-ending little nasty injustices that the chronically ill in the country have to face every single damned day that get to you over time.

I won't even bring up the complications. You can read about those in any publication about Type 1.

Until you have lived with this disease as a working adult, you will not truly understand what it is to live with it in a world that could really give a rat's ass if you're sick. The business world wants its trains to run on time, thank you and the attitude of most businesses seems to be "sorry you're ill, but I need that report'. They also could care less if you need time to test your blood sugar, if you need a walk at lunch to bring down a high glucose reading, or to take time out if your blood sugar decides to head down into the single digits. Any one of these scenarios can get you fired, depending on the job and depending on how lenient the employer is in deaing with illness. Unlike what is typically viewed as a disability, such as blindness or being confined to a wheelchair, diabetes sufferers of either type seem to land in this grey no-man's land regarding how they are employed and what kind of work they are considered suited for. It's almost a Catch-22; to be employed, you have to prove to an employer that you are fully capable of doing a job, but once you do make a case for your employability and seek some small accomodation in order to make sure you are healthy to do the job, you are classified as 'disabled' and therefore unemployable. And then, you are blamed for your condition, since everyone knows its the diabetic's fault if they aren't 100% in control, since we are supposed to be perfect in our 'management' of this disease. I'd have to say that a majority of Type 1 diabetic adults live in a constant low grade state of fear whether they will admit it or not. They are afraid that they will lose their jobs and thus lose the group health insurance they do have, that they will be unable to financially provide for their families with the additional costs this disease thrusts on them. Ever price test strips retail? I have and it's disgusting - nice to know I'm funding some pharmaceutical company executive's vacation, golden parachute and retirement package. You could extend these fears to anyone stuck with a lifelong chronic illness - Type 1's aren't the only people in this postion.

Gordon, while I respect your positive attitude, you've only had this for a short time. In a decade (that is when they are promising a cure, right, just like ten years ago and twenty years prior to that) come back and talk to me and tell me what you've discovered about living as an adult with condition. If you can maintain your current outlook without gaining some hard-won cynicism, I will stand corrected. I think, in the next ten years, you will understand where those of us who are veterans of this are coming from in our weariness and anger at the lack of substantial progress toward a cure. We're also pretty miffed at the increasing difficulty of making our way in a society that increasingly shows little tolerance or understanding for the chronically ill.

Again, I ask all the Type 1 adults out there, along with any over-18 members of their families, what they intend to do in the next election? I have no political opinion at this point, save that I tend to favor Democrats who put science ahead of religious superstition. Since we are held 100% acountable for our own care by the public and the medical establishment and since our endocrinologists can always wash their hands of any responsibility regarding our general condition (After all, we are supposed to manage it perfectly right, and any complications are our own fault, correct?), I say we take matters into our own hands and elect someone who will at least lift the ban on federally funded research into stem cell replacement research. I don't really care who it is, and I don't care which party the person comes from. It's also a little hard to tell who believes what, with everyone jockying for the middle right now (It's going to be a long sixteen months folks - pull up a chair and get a ringside seat) but any candidate that can at least promise and follow through on that one little point alone might win enough Type 1-motivated votes in a district to turn the tide of an election. It's something to consider.

CJC

I've had type 1 diabetes for 38 years and this isn't living this is only survival. I have been fired from jobs due to insulin reactions. I can't work outside the house because I never know when I'll have a reaction or how I will feel. I can be ill for minutes or hours depending on the reaction. My husband won't deal with my reactions any longer because I get very difficult and fight. For those of you who don't have diabetes imagine being awoken by someone forcing food into your mouth. How would you react? He has told me he will seek medical attention when I am not conscious. I feel my life is in jeopardy, but it would be if I was living alone too. He has insurance coverage, I can't get any. My A1C is always in the average range, so what! I am very careful about what I eat, so what! Diabetes isn't just diet control. I don't have any complications so far. For those of you who think we should cheer up, you obviously haven't lived with this horrible disease for long. This disease seems to be getting harder to live with the closer I get to menopause. Does anyone know if this is true?
Don't get me wrong, I love being alive but my quality of life is pretty poor with a constant fear of death or my blood sugar dropping to the point of not being able to function. I live with fear every waking and sleeping moment. I'd like to thank each of you for sharing a bit of your lives. This is the first time I have been able to vent about this d**n disease in 38 years.

I'm from the US. Have there been any updates to the pepper solution that was posted in 2006?

I need a cure and need it now! I'm sick of this disease.

Hi Again,
Well it took me a while to find this site again... I can say it was a great read again, It really gave type 1's a place to vent and why should we be told how miserable we are by a non diabetic... I mean I am angry also about having this disease but I am generally a happy person.
CJC its been a year now, reached my anniversary in June... I celebrated by eating a block of chocolate, real creamy chocolate, and hey I am human and been a non diabetic longer than a diabetic and I am going to stuff up alot... and I do!
Well the artificial pancreas has hit the news hear with the study in cambridge, they have now developed a closed loop system blah blah Bring it On! I just want something to now say "this new treatment will be available to type 1 diabetics and they will no longer be at risk of " Thats the dream!
So I thought everyone was great and all responses really informative and interesting and I loved reading everyones... I just wish they could be forwarded to some of the politicians, scientists etc..
Where do we all go from here....
By the way I got diagnosed at 30, I have a supportive boss who does everything she can for me... I am lucky and I work in welfare, so it would be a little hypocritical if they did not care about mine!
Rachel

Amy - again, I am sorry that your son was diagnosed with this and I' am very glad he's doing well so far. It sounds as if he's got two very supportive parents that care deeply about him and are sparing no expense and time and resources to help him manage his condiiton.

Not all of us were so lucky to have what your son has, both in terms of parents and in terms of the environment in which our diabetes manifested. If I have a darker view of what diabetes is and what life with this condition is like, perhaps it is because I come from an environment that was the opposite of what you are providing for your child. I was left to figure out how to deal with my diabetes on my own at the age of 11. My father was completely absent (physically and financially) and what support I had came from a single mother that was struggling with her own health issues (barely controlled Chron's disease) as well as attempting to take care of three children on her own while divorcing an abusive, alcoholic second husband. Please also understand that the treatment regime that your son is on is a modern one and that he has many more options for insulin delivery and far more blood sugar monitoring options that I had when I was diagnosed. Hence, he stands a good chance, if he takes care of himself, of holding off some of the worst complications this disease carries with it over time. My options were a little more primitive and I remember having to educate myself with what little literature there was on Type 1 diabetes at the time by reading books geared toward adults, not children (thank you, Granger Public Library) and those books, while informative, did not take the usual 'do what you're told and you'll be fine' route taken by most literature aimed at Type 1 children. I saw unvarnished full color photos of what long term Type 1 diabetic complications looked like - there is something about confronting the reality of a disease, minus the sugar-coating (no joke intended), that makes you grow up fairly quickly and take things far more seriously than any child should really have to. But I'm glad, in a way, that I learned early to take care of myself and to figure out how to cope without close parental supervision: moving out of the house and going to college were probably easier, diabetically, because of it but the road to getting there was pretty difficult. Not every child diagnosed with Type 1 diabetes has the advantages your son has, and I'd be careful about saying 'CHEER UP' if you don't know what kind of environment a newly dignosed Type 1 diabetic is going to have to cope with while also learning how to 'manage' (HAH!) this disease. Every time I think of leaving my job and my insurance to pursue something I love doing, I just remember those photos of the leg ulcers and the blackened feet and the eyes that were made useless by retinopathy - they are the cold, brutal evidence of what diabetes can do to a person without the supplies and medicines to take care of it. They are always in the back of my mind, for good or bad.

I hope your son stays healthy and I hope, for his sake, that he is able to get health insurance when it comes time for him to leave the nest. I hope his dreams aren't stunted by having to take a career path that will provide him with affordable insurance rather than doing what he loves. Without a lot of money or family support as a buffer, Type 1 diabetes can easily kill dreams. I hope your son's dreams don't die on the vine.

Fed Up;
Gods, I'm sorry that you're having a rough time - I wish I could make it better for you. I've recently volunteered as a lab rat for some studies that deal with the genetic side of Type 1 - we'll see if forking over some blood and tissue on my part can help make a difference down the road. You aren't alone though - lots of Type 1 adults find themselves in similar circumstances and the support for adults with Type 1 diabetes is pretty friggin' dismal. As I've pointed out - it seems like once you're no longer short and cute enough to help with fundraising efforts, you're told to just 'grow up' and 'learn to manage'. One of the biggest failings in our current care for Type 1 diabetics involves the transition period from 'dependent', when Mommy and Daddy are hoving over you helping you take care of things to suddenly finding yourself out on the street being told that you have to figure things out for yourself and get health insurance coverage (again, HAH!). It's incredibly rough and the sad thing is that adult Type 1 diabetics are only now beginning to talk about what they go through and to network with one another for support. I'd start Googling some of the Type 1 oriented blogs that have cropped up recently. 'Six Until Me is pretty good" as is Scott Strumello's blog - he's pretty sharp and isn't afraid to hold the pharmaceutical and insurance industri's feet to the fire on issues regarding research, coverage, cost and the lack of progress if he feels it's warranted. Read the info - at least you know you're not the only one who's sick and tired and pissed about the pace or research and treatment.

As for your hubby, he made a promise to love, honor, cherish and take care of you, until death do you part. Those words are usually part of the ceremony, if memory serves me correctly. If you are doing all you can to try to manage this unpredictable, pain-in-the-ass condition, then he needs to live us to his end of the marriage bargain (and part of marriage IS an agreement between two people) and understand that you're hurting, sick and that he needs to be understanding. Remember the 'for better of for worse' part, the 'in sickness and in health? Did he think that was just a sayin and that the vows only counted as long as everything was great? I hate to break it to him, but this is part of the 'for worse' part of marriage and he needs to step up to the plate, be a man and take care of his wife. If he doesn't, then contact me privately and I'll give you the number of a divorce lawyer that will make him rue the day he was born. End of subject. Sorry if I soulnd vicious about this, but I can't stand people that waltz out when things start getting a little tough. See the above paragraph about my father. Hang in there, hon. I found myself a saint and I married him and I can honestly say I get down on my knees every morning (usually while looking for my sneakers) and thank whatever powers that happen to be passing through that I am married to such a good-hearted, responsible, loving man. A wonderful caring spouse is one of the greatest assets the chronically ill can have. he is the best thing in my life, hands down.

Of course, he might have ulterior motives for sticking around - I can cook and I'm pretty sure he doesn't want to go back to the days of nightly frozen pizza and prepackaged mac and cheese.;-)

CJC

I'm a 29 year old type 1, diagnosed a year and a half ago. I've been managing it pretty well, but am burdened by the cost of it (I have no health insurance), and my blood sugar tends to drop at work. I have recently been encouraged by two co-workers (one an ayurvedic master, the other a nutritionist) that type 1 can be cured with very strict diet and exercise practices. This was astonishing to me, has anyone else heard or experienced this?

Even if they are misinformed, I'm very interested in alternative therapies. I've heard wonders about using blueberry leaf to lower blood sugar levels (and therefore require less insulin). I've also heard that eating bitter melon helps. Has anyone had good or bad experiences with these? Are there other alternative therapies you could recommend?

Thanks!

Stacy... there is an old saying about fools and their money, regarding a quick parting of the ways. At a year-and-a-half of having Type 1, you're probably still a little in the denial phase. I know I was. It's understandable to want a miracle, to hope that maybe the doctors were wrong and that there is some enchanted cure out there for you that the big bad medical establishment is hiding from you (which is kind of a laughable thought, because if there was such a thing, Big Pharma would be busy trying to make a fast and sustainable buck off of it). Your lack of health insurance isn't helping the situation and is probably contributing to the desire to throw your hard-earned cash at the other end of the medical care spectrum: the witch doctors.

Don't, I repeat, don't give them your money. Ever.

While I have some serious problems with Big Pharma regarding their money-grubbing habits, their lack of a desire to cure illness and their focus on the latest anti-impotence and blood pressue drugs, those issues pale in comparison to the utter hate and loathing I have for the entire group of hippie-dippies on the other side of the fence making CLAIMS THAT THEY CANNOT BACK UP IN ORDER TO TAKE MONEY FROM THE DESPERATE. Congrats - you've just run into the snake-oil salesmen an the well-meaning hippies wiht bad advice and if you aren't careful, you will be much poorer AND STILL a Type 1 diabetic.

Let's get a couple of things out in the open. No matter how much you wish it, THERE IS NO CURE FOR DIABETES. THERE IS NO CURE FOR TYPE 1. THERE IS NO REAL CURE FOR TYPE 2, NO MATTER HOW MUCH WEIGHT YOU LOSE AND HOW CLOSELY YOU MONITOR YOUR DIET. YOU WILL STILL BE A DIABETIC.

ANYONE WHO TELLS YOU OTHERWISE IS EITHER TRYING TO PART YOU FROM YOUR MONEY OR IS GROSSLY MISINFORMED ABOUT DIABETES AS A WHOLE.

I wish wholeheartedly that this wasn't the case, but it's true. Alternative therapies might address brnging your blood sugar down a little and I'm fairly certain that the vitamins, the bee pollen and the blueberry leaves won't hurt you. But they won't cure you either and nothing can change that for now. The so-called 'nutritionist' you talked to that claimed you could cure Type 1 diabetes with 'exercise and a strict diet' should be turned into the medical board of whatever state she's in. She should be censured and whatever license she has revoked. Permanently. Unless she was mistaking Type 1 diabetes for Type 2 diabetes, in which case the aforementioned should happen simply because someone that ignorant should not be dispensing medical and nutritional advice. The wrong information in the case of a Type 1 diabetic is not only incredibly negligent, it can be potentially deadly, to you and others (should you be behind, say, the wheel of a car when your blood sugar hits 900). She's wrong. Go to a REAL endocrinologist and get a reference for a REAL nutritionist that can help you with carb counting.

As for that 'Aruvedic Master'... You know, if the Aruvedic tradition was such good medicine for diabetes, why the hell is there a huge epidemic of both types of diabetes in India? I mean, that's where the Aruvedic tradition originated, right? It may be great for overall health, but it can't cure Type 1 diabetes. Neither can Gardnerian witchraft, faith healing, snake venom, peyote smoked in a sweat lodge, massage therapy (though at least THAT will help you feel better after about an hour or so), accupuncture or Chinese herbalism. Altenatives to traditonal medicine are fine up to a point. Whatever makes you feel better. If a non-diabetic tells me they've achieved greater health through such practices, then great. Yippie. However, I doubt you will find a Type 1 diabetic that has EVER been able to go off insulin using one of these methods. Look as hard as you like. Take your time *examines nails*.

Even if a Type 1 diabetic doesn't actively pursue alternative treatments, certain elements in our society pressure us to 'go natural' and try things that will ultimately hurt us if we substitute them for our insulin. Case in point: I lived with a guy for about two and a half years who was into the whole 'New Age' belief system, lock, stock and barrel. I chalk the relationship up to being young, very stupid and a sucker for bass players (my own personal failing). The guy in question was so into his beliefs that anything that did not conform to what he belived reality to be was dismissed. this included things like traditonal medicine and the laws of gravity on occasion. When finally dumped me, He yelled at me because I wouldn't agree to spiritually give up my diabetes' and skip down the frigging path of enlightenment with him. If only I could. He told me he couldn't deal with my occasional bouts of hypoglycemia, watching me take shots and test my blood, watching me eat meat (admittedly, a separate subject - I tried to go vegetarian for his and our grocery bill's sake and ended up in the hospital - he said I wasn't trying hard enough) and taking preventative ACE inhibitors. Then he brought up how Deepak Chopra had a cure for Type 1 diabetes and if I loved him I'd give up my diabetes because he was having a hard time dealing with it.

I told him that I couldn't just 'give it up' to be more in line with some New Age ideal, but that it was medically impossible. I also told him that if there were times that he couldn't deal with my illness, there were certainly times that I had trouble dealing with it too. I am grateful now that it ended - my husband has no trouble fetching me a glass of OJ if I need it and his only concern is for my well being, not that I'm shattering his dogma.

My opinion of New Age health 'practitioners' such as Chopra, their obsession with rejecting science-based medicine in favor of mysticism, and their willingness to charge money in order to foist worthless 'cures' for Type 1 diabetes on the recently diagnosed and fearful is somethere below slime and just above a used urinal cake (harsh? YES! DESERVEDLY SO!). But only just above that. People have died while under the care of these charlatans, and this includes children whose parents were desperate to prove that the doctors were wrong about THEIR kid having Type 1. Also, don't be deceived by those Google ads promising cures that don't exist. I've written to Google on occasion and warned them what might happen to them if someone croaks and they trace the cure back to something Google was promoting on their ad bars. Caveat Emptor only counts if the victim is an adult and makes the conscious choice to try the so called cure. children don't often have that option. And none of these so called cures are cheap. If you think you've got a hard time paying for insulin and needles now, wait until the witch doctors, 'masters', the naturooaths and the other vestiges of discredited Galenic and religion-based medicine (I'm surprised that no one has told you yet that your condition is due to an imbalance in humors :-P) have had a go at your wallet.

If anyone in the New Age 'medical' Community wishes to take me on for my criticism of the swindlers in their midst, bring it. Better yet, trot your cured Type 1 diabetic out for everyone to look at and have it confirmed by an certified endocrinologist at the Barbara Davis Center in Denver. I'll even know the doc you can talk to. C'mon, if you have a cure, let's see it work. I dare you.

Stacy, if your blood sugar drops at work (not sure what shift you're on - I worked third shift when I was younger and had incredibly bad insulin reactions due to shot timing, delayed meals, etc.) Try keeping glucose tabs or something that you won't be tempted to snack on at your desk in case you feel lightheaded or shaky. If you don't have a desk job, ask the boss if you can carry glucose tabs on your person, just in case. Because you wouldn't want to sue the guy for all he's worth if you happen to have a low blood sugar episode on the job and be denied the time and the methods to treat a legitimate and easily managed medical condition. Depending on where you are, look up the laws related to illness in the workplace and see if you can't make your case to him that way if he resists. Try to be nice first though, and phrase it so that he believes he's you're doing him and his company a favor by being so careful of your own health. Bosses love that; it shows initiative.

CJC

Has anyone actually tried blueberry leaf, goldenseal root, or any other alternative therapies? If so, what was your result?

we are all people. We are way to smart for this $h!t. We can only be tied to these puppet strings for so long before, well..... we snap!. And if diabetes is a so called "epidemic" then RIGHT now the government better screw their heads on straight..... Because when the (you know what) hits the fan, there will be a WHOLE LOT OF PISSED OFF DIABETIC PEOPLE who are just about to burn entire cities. Forget Terrorism, where your next problem, Bush.

Ok, I'm new here. As I read through all the comments and postings here I have to say "WOW, are you guys angry!!!"
CJC- I agreee with you about all the witch doctors and miracle healing people out there, it's not true. The absolute best they can do is help some, they can't cure. I had a coworker friend that was type1 for most of his life and knew he couldn't live without his insulin (humalin back in those days), but every couple of years his church would tell him that he didn't need insulin anymore..... a week later he was in the hospital. It seems that people are very happy to tell other to try things when they haven't done or tried them theirself!
I also have to agree with everyone here with the statement "Where are the cures?" It seems that diabetes has been cured in test animals plenty of times, but it never seems to translate into a good human cure...... seems fishy to me. With all the cures I've read about I find it hard to believe nothing is useful in humans. Who cares if it is only 40% effective, let me try it!! I think insurance companies would even foot the bill. Why?, because it will increase theur bottom line if we're not all suckling off the insurance teet for more supplies!!
Where I have to disagree with the consensus here is the workplace comments. I have been type 1 for over 20 years and have NEVER had a problem with doing what I had to to manage myself and my diabetes. Right now I work at the greatest job in the world and can take as much time as I need and the boss don't even question it. Even if I have a reaction in the morning (which is popular with me lately) I just get in whenever I can and use "sick time". My insurance covers everything I have ever needed to manage my diabetes. In the Spring this year I started pod type insulin pums that are even covered by insurance.
*By tghe way, ladies, I am single and have great insurance!! --LOL

I think it's great there are places like this to vent and get another's opinion and some insight as to what's going on in the diabetes world! Let's keep this post rolling for a few years to inform everyone!!

-Eric

Greetings people,
Re "Diamaxol". My understanding is there are more people researching cancer than are dieing from it.
Reasearch is where the money is. If some little company comes up with a "cure" for any of the worlds major pandemics such as cancer, diabetes, aids etc the big companies close them down. They discredit them in many forms.
As for who has done the research on Diamaxol and who has heard of it. Who did the research on "it doesn't work"? If the manufacturers label is correct in what they have placed in the product it will work. It will work because those plants etc have a track record of working.
I myself have thought of putting H2O into capsules to cure dehydration. No doubt some big pharmasutical company will come up with a reason it won't work (till they have the patent on it)
OK I was being silly but you get my drift.
The logical question is who has taken it and what were the results?
CO INCIDENTLY when I tried the product I ad possitive results. I was taking 54 units of insulin per meal AS PER DOCTORS ORDERS to get my blood sugars under control. Each visit I was told to take more insulin. That was until I tried Diamaxol. I now have ten to sixteen units of insulin each meal and have done nothing else to change the readings.
I must admit though I do have a problem with the price. Buying ten bottles for $400US to have them on my desk is a lot of money but having to purchase a lot less insulin goes to offset the price.
Against my better judgement of buying American I tried it and I personaly am happy with the results.
Buying American means we in Australia don't have the guarentees etc and safety proceedures in place we get with local products. "Buyer beware" as they say.
So far customs let me bring them in so I can assume no problem legaly. If it kills me I have no recourse on the company.

Hi again,
I am now heading towards my two year mark, wow... It does seem so much longer but yet It also seems like yesterday that I did not have it. I have pretty ok control, niether bad nor great. I have found the whole low carb eating so much better as I never knew insulin also made you fat... another great side effect.. Trying to lose the 15 kilos since diagnosis.
I have to say I have thought of trying the diamoxil but really did not want to waste my hard earned cash, I only have around 4 units breakfast lunch and 8 for dinner and 30 overnight... I have been told that is not much insulin.. Are there different severities (not sure of spelling sorry) for type 1. I mean, I have been told I am excellent.. Of course I have no complications but as I said only going on two years?
I am really pissed about people calling us angry and saying we need therapy, what we arent allowed to be angry about having our lives completely turned upside down... By having a future that almost guarantees complications... of being stressed about a hell of alot more than before diabetes.. We cant vent! I really think if you dont live with it, dont pass judgement on how we deal with it.
Its great to vent and hear others, it does not make me negative or depressed, it just makes some of the feelings that I have seem validated.. I love reading about others experience and all I get from it is how strong everyone is...
Thanks everyone..
Rachel

i Am mighty upset about the cessation of production of Ultralente. I have been unsuccessful on NPH, the insulin pump, and lantus does bad things to my concentration and memory. Lilly's UL isn't great but it's the best I've found. I am currently using expired UL because Lilly isn't making it anymore because there is not enough demand. Yet the people who use it really need it. I would suggest. Anyone with me to push some legislation to require production of it,. like they required some HIV meds to be made (generic) because of public health risks? Anyone else use UL or find a good alternativre? I used to have violent reactions on NPH but I'm afraid I'll have to go back to that, after 10 or so years off of it. Any ideas? I am so frustrated, disappointed, upset about this.

seriously...its the western world we live in. We didnt just "develop" deiabetes...we were given diabetes. Through tainted foods and vaccines that the FDA sprinkles their magic ingridiants in...so that we are much more likely to develop a "managable disease" (remember, managable is GOOD for them as it yeilds big $$) Think of the big drug craze back in the 60's. From then to now, any disease that can be realisticly managed (like diabetes) has NOT been cured...its totally curable! there isnt a person in the world who can convince me that theres not a cure. There is a top secret documented cure for type 1 diabetes locked in the vault to be braught out the day that our plagued population needs it...I'd estimate 20 years from now. As long as their making money and we keep putting up with it...guess what...we will still have diabetes! Think of it...just flip on your TV...that all you see is happy people in commercials talking about their new high-tech glucose meter. There are hundereds of thousands of people employed off of type 1 diabetes and BILLIONS of dollars made. So a "cure"??? what would a cure do to all these jobs and billions of dollars? this is why we are "the western world" We are free because we are trapped. The world turns from a few big companies. 1)food 2)drugs 3)-insurance ...and they all convinantly work with each other. Curing diseases would literally stop the economic world from turning. This is where all the wealth comes from. It just wont stop.

*sighs*

Michelle: I had the opposite reaction to UL. It gave me some of the most severe hypoglycemic reactions I've ever had, when the long acting insulin peaked when what was leftover from my morning dosage coincied with the evenng dosage. The overlap made me seizure. Lantus, an insulin analog, lasts for 24 hours, but there have been problems with it as well among members of the type 1 population. I advise you to go to Scott Strumello's blog (http://sstrumello.blogspot.com/) and read through the last two years of his reporting on the various foibles of the insulin cartel as well as the glaring holes and inconsistencies concerning treatment protocols for Type 1 diabetics. He talks about the financial and business decisions that have led to the withdrawal of Lantus from the market. As for your request for generic UL... did you know that there is no generic insuin (or any injectable, really) due to loopholes regaring drugs that are biologically engineered, the way Humalog and other more recent insulin analogs are created. The FDA has extended the patent protections for these drugs, due to lobbying on the part of Big Pharma. Lilly is a prime offender in keeping a generic form of insulin from being developed.

But then, this really shouldn't surprise you, right?

Big D: at the risk of sounding like Scully "Mulder, I think you're seeing conspiracies where there aren't any". The real reason there is no cure for Type 1 diabetes is an economic one, not one of government conspiracies. Unless you count the number of lawmakers who are being hounded and bribed at the moment to stop passage of a bill under consideration in the Senate (it is currently hung up in committee) that would allow for the development of generic injectable medicines like insulin. That I'd believe. Really, there is no secret cure out there in a vault being hidden by our government at Area 51 next to the alien bodies or the National Institute of Health. Our government bureaucracy can barely find its butt with its hands on a good day - it isn't competent enough to orchestrate a coverup like the one you are describing. Not when there is money to be made from it. The majority of Type 1 diabetics are white and roughly middle class, given the statistics. There is money to be made by marketing to that demographic, or rather the terrified parents of that demographic, and they would no doubt pony up everything they owned to cure their child. Do you honestly think any pharmaceutical company that had access to something like that would pass on the chance to make beaucoup bucks off of it? While most of them wouldn't want to waste money on R&D for a cure, if ther was one already out there, you've have a catfight among companies to be the first to file a patent on it. I'd take the rumors of a cure that is being witheld by the government with a big grain of salt.

Rachel: I find that being pissed and enraged enough to write lots of letters to my representatives helps a little to deal with the depression I have about being sentenced to life with this disease. It is entirely understandable that we are angry, considering the hurdles we are forced to either jump over just to survive. No Type 1 diabetic is at fault for their autoimmune condition and yet, we are painted with the same derisive brush reserved for those with Type 2. Who don't really deserve it either.

I also find it very funny that diabetes seems to be a disease that people who do not suffer from it feel justified in acting as judge and jury towards those that do have it. It is seen as a disease that is generated by unhealthy habits, rather than by genetics. Thanks to the media and their current fixation on the relation of Type 2 diabetes with obesity, diabetes is being equated with other conditions such as alchoholism and drug abuse. The implication is that all diabetics are food abusers or fatties or self-destructive and that they need guidance from others who will 'keep them straight'. There is no real sympathy for diabetics, as a whole, unless you are touched by the disease or have a family member that has it. There is also a great deal of ignorance about it as a whole; I give you the recent brouhaha aobut Halle Berry going from "Type 1 to "Type 2" with exercise and diet and better care from her doctors. it unleashed a flurry of nasty letters and comments from doctors regarding Ms. Berry, who I guess is really a Type 2 If she has managed to get herself off of insulin. No Type 1 can do that, and yet, here's the media, feeding into the misinformation. I'm not sure who to really be pissed at, Ms. Berry (who ought to know better) or the reporters (who should have practiced some of the research skills they supposedly picked up in journalism school *rolls eyes*

There are a couple of books that might help: "Sweet Invisible Body" and "Diabetes Burnout". You can find them on Amazon. Both books describe exactly what most diabetics, adults in particular, are dealing with regarding the treatment regime we as Type 1 diabetics are expected to follow and how hard it is to do so over a long period of time. It at least talks about the mental anguish, the dispari and the mental weriness that this disease brings with it over a long time.

So again, I ask... when will the diabetics in the U.S, Type 1 and Type 2, rise up and start demanding that things change? If you hate what you have to do to survive, if you hate being held captive by your medications and if you hate the lack of progress, what can you do about it? I guarantee, our ranks are growing, and if we make enough loud, angry noise, we will get the attention we need to make those changes. Imagine... a world where an insurance company can't deny you coverage and will cover your supplies at an affordable rate. It can happen, but everyone who suffers from this disease needs to get off their asses and start screaming for change. Imagine a real cure, funded and supported by the government, and given away to cure the ill, just as Banting, the discoverer of insulin in 1920, did with the formula. He gave it away for a dollar, because he wanted it to come to market quickly. The number of diabetics of voting age is rising swiftly and if we wanted to, we could make our presence know in a way that hasn't been seen before. 2008 is coming and with it the possiblity of at least health care reform.

Because if we don't take up our cause, no one else will.

I suppose all but a few lucky ones in this world have a few deleterious genes that have have hung around despite natural selection. My daughter got Type I after taking several courses of treatment with accutane. No family history whatsoever.

Genes are not always destiny. Genes are instructions, the steps of potential recipes. In part it's the raw materials available (minerals, vitamins, etc. ) plus what we do that determine which of those potential recipes is followed and how often. Is it possible for the islet cells of a damaged pancreas to recover? Why not? Has the autoimmune theory been proven ? From what I have read, no. There's a lot more to know about this disease both in terms of genes and potential triggers. More $$$ for research would help.

It's a tough disease to live with. No breaks. Always have to think, think, think about what you are doing.

Hi everyone and anyone. I came across this site just searching around for diabetes. I have read several of the above postings and must say I am impressed with the quality of writing and expression. I am 45 years old and have was diagnosed with Type 1 diabetes at age 14. So I have been doing this thing for 31 years. I have run the gamut. From complete denial and rebellion to survival mode to getting by to doing ok and now I am excelling. When I got it back in 1976 I had to pee on a strip to see how much sugar I was spilling. Meters came out sometime later and I did not much like testing. I hated to see the highs. Well, only because I have had at least one guardian angel watching over me I stayed alive. About 5 years ago I made a decision to get better and I have gotten tremendous results. I have reduced my A1C's from around 9 to under 6.5 with very few lows. I have reduced diabetic retinapathy that I was slowly acquiring. I went on the pump about 3 years ago and that was key. I work out hard. I went through an intensive yoga training program and I do Bikram yoga everyday. I have put more of my focus on food and my relationship to it. I have used acupuncture, cranial sacral therapy, massage and other hands on work to process emotional issues and balance my body. I have decided that I want my life's work to be in the area of helping others with this disease. I have been a corporate trainer all of my career. My emphasis has been on training development and I have been thinking about and writing down my thoughts and insights on how to approach this disease. I have identified a 5 step process as the core of my training. It follows a process that I was introduced to by one of my mentors in training. The growth process is......1. Confusion 2. Exploration 3. Incubation 4. Illumination 5. Celebration. I have mirrored this to specifically address diabetes and it goes like this 1. Confront 2. Understand 3. Accept 4. Master 5. Triumph. This 5 step process in not linear; it is cyclical. We are constantly cycling through all 5 as we grow. Through my 31 years of living with Type 1 diabetes I have learned a great deal. I want to share what I have learned. The disease can only be mastered by mastering oneself. By a commitment to growth and a knowing (Faith) that the end result is LIBERATION. Yes, we will triumph over this disease. The doctors can't do it. The researchers can't do it. We must do it and we can. To those of you thinking about checking out. I understand. So much of my life has been with me sitting with my back against the wall feeling like there was no hope and that I was helpless in affecting the change I needed. Don't give up yet. The key to licking this disease is your attitude. The way to develop your attitude is to accept that you are 100% responsible for it. "99% commitment is a bitch, 100% commitment is a cinch." Attitude is the lynchpin. After that is a little training in insulin dosage, food and exercise. It is sometimes best to begin to transform your attitude with the help of "workouts". The mind and body are one. Begin to transform your body by an aggressive approach to your working out and your mental habits will become softer and easier to change. Type 1 diabetes injects tremendous doubt into the physical, mental and emotional body not to mention the family/relationship system. It is our mission and life long journey to overcome this doubt and replace it with certainty. The Kabbalists say that doubt is the enemy. The Christians put much value in faith. I, personally, have not been able to commit to a particular model of Truth. But I think they are right. God bless...

Michael

I have found the key to go control Yoga!!!

I think that most of us type 1 diabetics are sick and tired of hearing or reading about 'promising research' year after year and decade after decade which all amount to nothing. I've had it since 1973(aged 9) and it has thoroughly screwed up my life(career and money) no matter how hard I have tried to control it. I do appreciate the person who discovered insulin and the people who made the glucose monitors possible. I haven't tried any pumps as I do not want needles in my flesh permanently. One thing I can say though is that I am only interested in a cure when it happens. I don't want to hear about any more promising research even if leads to a cure. I've been hearing and reading about promising research for almost my entire life and no results yet. I do not have to worry about passing diabetes on to a new generation because women do not want to procreate with someone on disability support.

Peter: Gads, I'm really sorry about your diagnosis. In 1973 the treatment protocols were pretty primative. I was diagnosed in 1980, at the age of 11 and it was only in early 2003 that i was put on modern insulins. The endo I was seeing at the time was an incredible jerk and didn't understand why I was depressed about some of insulin's side effects, such as severe hypoglycemia episodes and the inevitable weight gain attributed to the kind of tight control they want you on these days. I agree with you - the media (who often get the facts about diabetes wrong, particularly about type 1 diabetics) is quick to report advances that are not really advances but exploratory research. Again, I think it is nifty that injecting capecisin into the nerves surrounding a beta cell can reverse type 1 diabetes. I have yet to see anyone actually DO anything with this knowledge. There are millions of adult Type 1 diabetics that would jump at the chance to undergo experimental procedures if there was the slimmest chance of success. Sadly, there doesn't seem to be either the will or the money to put research results to work. Take for example, C-peptide, a byproduct of the body's insulin production. Turns out that most of the complications we suffer are due to the lack of C-peptide, rather than a lack of tight glucose control (though hyperglycemia doesn't really help either). Now, can we get C-peptide as an injectable? You would think that there would be a ton of interest in keeping those of us who require support from the state due to our ill health off the dole or Social Security. but no - there really isn't any desire on the part of pharmaceutical companies to manufacture something for such a small sliver of the total diabetic population. Type 2's don't need it, so it won't be created, because it wouldn't be profitable to do so. The logic of the U.S. healthcare system (or rather, the lack of it) stuns me sometimes. The idiots running it would rather dump tons of money into treating symptons rather than curing the disease and saving everone, including taxpayers, a ton of cash. Unbelieveable. Sometimes I think this country deserves all the misery it creates for itself when it comes to healthcare, the reward for the inaction, passivity and apathy of its populace, as well as its inability to value prevention measures like diet and exercise counseling and vaccinations over expensive late-term treatments such as transplants.

Michael: Yoga is great. But it isn't a cure and the only thing that will keep you alive is, ultimately pumping or injectin insulin. I would say that if it makes your sugars better and you feel better, do it. Just don't try to substitute Yoga (any form of it) for real medicine, blood glucose monitoring and constant vigilance. Good luck.

my son has type 1, found out nov 15/07. he,s 11 , were getting use to it, he does all his own testing, fixs his lows, we do all the injections, its hard, but there are a lot of worse things that he could of got. ya i spend alot of time on the net, looking for a miricle. have great support from the
kids hospital in edmonton, alberta, i met the docter that does the islet cell transplants.
not recomended for young kids at all.
i only have the 1 child and he,s spoiled, but so what, I was working at 12 (farmer) never got to do things when i was young, and i,m sure gona let him do what i didn,t.
i,ll work till i drop dead for him

My son was diagnosed diabetes type 1 at age 11. He is now 45, a veterinary doctor, married with one child. I am worried as I see now he is not doing so well, had eye surgery some time ago, and is not seeing well not withstanding, plus he seems quiet lately, for he was always full of zest. I looked on the Internet and found a site with some recommendations, based on people who have TOTALLY CURED type 1 no matter after 50 years with the condition. Even if many people lose hope and say there is NO CURE, why not? This site should be examined by those interested, especially the “Possible Cause #3: Scar Tissue or Fibrin or a Thick Mucus Covering the Beta Cells.” In our case, it fits, as I always wondered why my son never got the usual children’s sickness, (mumps, etc.) which his siblings got. From that site, I got to the site of Dr. Wong’s article. WOW!
You can look at:
http://www.cancertutor.com/Diabetes/Diabetes_Type_I.htm

Kolasa - I am terribly sorry your son has had to suffer from the complications caused by this disease. However, if you read through my past posts, you will note that THERE IS NO CURE FOR TYPE 1 DIABETES. Aside from the New Age snake oil salesmen and the dippy alternative medicine pushers, another group that really pisses me off are those that claim that they have some super secret cure that the government just isn't telling people about and that they have cured numerous Type 1 diabetics of their condition. Some of these jerks even claim to be doctors and they all charge money for the info.

Again, I say to them, trot out your cured Type 1 diabetic, prove to us via a verifiable medical history and the testimony of two unaffiliated doctors or endocrinologists that he person that they are using as an example of the cure was indeed a Type 1 diabetic and then have them give a detailed outline of just how such a miracle was accomplished. Pardon me for rolling my eyes. These people want your money and they will tell you whatever you want to hear to get it. I can't stop you from giving it to them, but I can at least warn you that if you do hand them your cash for their 'cure', your wallet will be lighter and your son will still be a diabetic. I hate to burst your bubble - I don't like taking any hope away from people who so desperately want to believe that there is something out there that can cure them, but it just isn't so right now. I wish to hell there was, but there isn't. All the wishing in the world won't do anything about getting a cure to your son faster.

There is an underlying theme to all of these claims of a cure, whether its through Chinese medicine (an oxymoron if there ever was one - I'm sorry, but the body parts of endangered animals such as bears and tigers ground up as a cure for impotence benefits only the poachers), or Yoga or some wild claim that someone claiming to be a doctor at Area 51 puts up on the internet. It is playing to the wishes of people who have been promised that there is a cure 'just around the corner' time and time and time again by the medical establishment seeking to cover it's butt and trying to keep attention from the fact they haven't been working as hard as they could have over the years for a cure. Hope, in my opinion, is a four letter word that is bandied about by the press whenever they want to make it seem as if there is some breakthrough new discovery out there (it sells more papers and more advertising) that will meet those promises every Type 1 diabetic has been told since they were diagnosed. You know the promises... "We'll have a cure by the time you're grown up!" or "A cure is just around the corner! " or "We're so close to finding a cure... please donate money!"

Yeah... those promises. I've stopped believing in doctor's promises. I've also stopped believing in unicorns, fairies, leprechauns and the Easter Bunny, though I think that my belief in the latter stuff ended later than in doctor's platitudes. Those same doctors said "Hey the needle they use for a HA1C won't really hurt..."

Again, pardon me if I roll my eyes. I'm a cynic. I've seen too much of what humanity is like - greedy, selfish, opportunistic - when money can be harvested from desperate parents of sick children, or the ill people themselves, for conditions with no known cure. What really gets me is that these scam artists like to post their little adverts using viral marketing techniques on blogs that are meant as support or informational outlets for those with chronic and uncurable conditions. Somehow, diabetes seems to attract the biggest proportion of online hucksters peddling fal