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The Agony of Type 1 Hope


Aug 9, 2013

I can only speak as a type 2. I don't for a second think that the problems I encounter managing my diabetes compare to what people with type 1 go through.


As an editor here at Diabetes Health, I'm in charge of several tasks, including monitoring the comments people write in response to stories we post on this website. I eliminate spam and kick out the abusive or obscene comments that some poor souls try to post.


But I also notice the tone of the legitimate comments that people write, and sometimes they disturb me.


Perhaps the most disturbing are the comments by type 1s, usually when we publish an article about the latest advance or study on this or that front in treating their condition. Basically, those comments are cries, or pleas, or protests about the agonizing slowness of finding a cure for diabetes, and the frustration at seeing yet another article discussing this or that high-tech approach to managing it.


Some people suspect a conspiracy by Big Pharma to continue profiting from diabetes as it dangles the prospect of a high-tech wonder treatment-or even a cure-in front of long-suffering type 1s. Others lament what they see as the excessive focus on the problems of people with type 2 diabetes, who constitute about 90 percent of people with diabetes.


There's no good answer to these complaints, at least in the sense of something that can wash away the sadness and frustration they express. Type 1s didn't ask for their condition. Luck of the genetic draw determined that at some point their immune systems would wrongfully go after their own beta cells and destroy them. With us type 2s, though, there is some culpability that involves choices we made that hastened our eventual slide into diabetes.


So, what to say to type 1s that can give them a bit of solace without sounding insincere or seeming to be going through the motions?


One thought is the always surprising genius of the human mind. An economist named George Gilder recently wrote that one thing we forget about what makes modern life so dynamic is the unexpected appearance of a person who has a great insight, or the arrival of a "Say, what?" idea from out of left field. For every diabetes-oriented company or research group that's seemingly stuck on tweaking old approaches and technologies, there is some inspired researcher out there who's working a new way to beat type 1.


Compared to 10 years ago, the strides people like that are making in figuring out a genetic approach to treatment, and even a cure, have been tremendous. We are much closer to understanding what leads to type 1-therefore, much closer to understanding how to knock down its underpinnings.


I'm in my 60s now, so am pretty much in the dessert stage of my turn at the table. My consolations lie in hopes for other people's futures. I genuinely believe that children and teens who now endure type 1 will see a cure in their lifetimes. I genuinely believe that we will be able to detect genetic markers for type 1 and treat children in the womb to avert the disease's post-birth onset.


The treatments will combine genetic manipulations and possibly nanotechnology-the insertion of microscopic robots tasked to do specific things in the body, such as deliver instructions to T cells to leave pancreatic beta cells the hell alone.


On the more personal level, groups like DiabetesSisters (www.diabetessisters.com) have made a determined and successful outreach to type 1 and type 2 women, gently insisting that what both types have in common far exceeds their differences.


For those of you who live in or near Northern California, DiabetesSisters is planning to hold its sixth annual Weekend for Women conference at the Embassy Suites San Francisco Airport in Burlingame. It's a wonderful event, with a combination of information and practical advice, poignant story sharing, and sheer fun (see article 7948 on this website).


Categories: DiabetesSisters, Nanotechnology, Type 1, Type 2



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Comments

Posted by Anonymous on 9 August 2013

Great article, thank you Mr. Totty. As a 32 year old Type 1, I am very eager for a cure in my lifetime! I routinely check google news for anything on a cure. Last June\July, there were a slew of announcements in the field of Type 1 Cures.

Stanford Researchers were able to create a vaccine which attached the T-Cells in mice, curing them of type 1 diabetes without any adverse effects.

Boston Children's Hospital was able to figure that pathway that causes the immune system to turn on itself in the first place in type 1 diabetics. By isolating this parthway (which is major) they hope to be able to figure how to turn it off.

University of Missouri was able to cure mice of type 1 diabetes using a new approach and stem cell transplantations.

Minnesota University has proven a new method of Islet Transplantation can be used to reverse type 1 diabetes in lab animals and is looking to market this new approach themselves.

My children are 10, 4 and 1. Should any of them develop type 1 in their lifetimes (I was a late bloomer @ 21) I am confident they won't have to live with it for long. I know there are a lot who bemoan the conspiracy of big pharma, I've even big guilty of that from time to time (because lets be honest, cures are less profitable than management) but all the above articles are a result of research coming out of schools. Schools like Minnesota are looking to take their treatments to market, and make profit from them. These are schools that have no investment in management, but could make a lot off of a cure ... I'm hopeful.

Posted by Anonymous on 13 August 2013

Hi Mr. Totty, Thank you very much for approaching what can sometimes be a hot-button issue. I am a 21-year old young adult with T1, and have had many experiences differentiating between T1 and T2 for individuals who ask about my experience with diabetes. And while this at times can be frustrating, I believe you are correct in saying that there are more similarities than differences, and that regardless of the type, diabetes is frustrating for all who have to deal with it. I write a blog for young adults with T1 on managing T1 while also pursuing dreams, and I am excited to share your post. Thank you for your thoughtful words.

Posted by Rick on 20 August 2013

I have been type 1 since the age of 18 and am now 65. truthfully diabetes has affected my body and life negatively in various ways. I have many complications. in the first 20 years there were not all the wonderful tools there are today to stay healthy and those 20 years did the most damage to my body. since then I am able to monitor my glucose level, started using an insulin pump, although multiple shots work as well for some folks, and now see several doctors, i.e. endo, opthamologist, podiatrist, orthopod, and medical and am presently doing well. I know younger people with type 1 will absolutely see a cure soon. I have grandchildren that are now diabetes free and hopefully will remain so. but I pray for everyone and encourage younger people to see your doctor regularly, see an eye doctor, foot doctor, and find a good endocrinologist. you won't have to worry about terrible complications or going blind. you'll stay healthy until the cure comes. God bless you all.

Posted by Anonymous on 20 August 2013

I agree with all that a cure would be wonderful. I am also in my sixties (actually only months from 70) and have been taking insulin since 1956. I am thrilled to be able to participate in the research at the Joslin Center at Harvard where they are making additional strides toward a cure for T1. I encourage all T1's and T2's too to volunteer as subjects for clinical studies whenever possible. I have done several including the ones for Lantus and for a Minimed Implantable Pump which I had for seven years. If you live in the area where such research is conducted, call the doctor or hospital or university and check it out. A side benefit is that the medical care is usually covered by the research grants. Also contact your Representatives and Senators and ask for more NIH money for diabetes CURE research.

Posted by Anonymous on 20 August 2013

I have had type 1 diabetes for 54 years, and was told when first diagnosed that a cure surely wasn't far away. This condition being an autoimmune one is fraught with unknowns. Stem cells will not work until we can turn the cause off, otherwise we go in circles. The answer is to live well with the condition, hope that our children do not develop it, and look forward to our future.

Posted by Anonymous on 20 August 2013

I am still patiently waiting for a cure. I was diagnosed T1 12/26/1963.
There are better meters, better insulin, better pumps, but still no cure yet.
I am very patient!!

Posted by Anonymous on 21 August 2013

I read many articles concerning both Type 1 and Type 2 diabetes. Our family has done the JDRF Walk for a Cure now for 12 years....since my granddaughter was diagnosed at the age of 4. Each year...our team grows as does our monetary goals. And yes, we pray for a cure for this disease. Life for a type 1 diabetic is so very hard. Ashley, my granddaughter, is very active in sports in high school. She has remained healthy except for the occasional trips to the ER when the flu or whatever bug is going around, affects her control. When I see my granddaughter and realize how very far she has come in the control of her diabetes...she simply amazes me! God bless all the diabetics out there....Thank you for your article.

Posted by Anonymous on 21 August 2013

Are there any groups for men out there like diabetic sisters


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