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Question:

From Ottawa, Ontario, Canada:

I'm 36 years old. I've had Type 1 diabetes for 26 years old now. I've always been classified as "brittle". Sugars always difficult to control. Many severe reactions to the point of unconsciousness.

My sister who is 2 years younger than I also was diagnosed with Type 1 diabetes. Two years ago my 7 year old daughter was diagnosed with Type 1 diabetes as well. Its very expensive, mind boggling, draining (physically and mentally) and takes quite a toll on all of us.

We manage okay, but sometimes I just want to stop the regime involved. I'm on 3 needles a day (min 2 blood tests/day), my daughter is on 2 needles a day (min 2 blood tests/day). My 9 year old son, and my husband don't have it, although, my husband's grandmother on his father's side had Type 1 diabetes. She's been deceased for several years now.

The reason I'm writing is to find out why no one has investigated our scenario in the diabetes research. No specific information was requested, we weren't contacted about anything. I would think with all the research, etc. going on someone would be interested in finding out why there's so much diabetes in our family. What triggered it? etc. I live in Ottawa, Ontario, Canada and don't know who to contact about how I can participate in the research aspect of diabetes. I think with my expertise of living with this illness I could benefit someone in the research department.

Answer:

Your family has certainly had more than its fair share of Type 1 diabetes and it is understandable that you should feel rather neglected. But let me offer some explanations and suggestions. The reason that you have not been contacted from a research point of view is that the great bulk of modern research has been occupied with understanding basic mechanisms rather than clinical experiences within the family. Sixty years ago, of course, that was very different and a story like yours might well have reached the medical journals.

Nonetheless an enormous amo summer in Vienna on Diabetes for example and there were over 1100 papers submitted, and even more at the ADA.

In Type 1 diabetes there is now a rather exact understanding of the types of molecules found on the surface of cells that either protect against diabetes or make people vulnerable to it. There is a growing understanding of how some types of white blood cells recognise these shapes and trigger the destruction of the islet cells. Linked to all of this are studies of how to screen for diabetes and prevent insulin dependance. In treatment there have been advances in the understanding of good control, the development of new insulins and progress albeit disappointingly slow in islet cell transplantation.

If you want to glimpse all this a little more closely you should contact and join the local Chapter of the Canadian Diabetes Association. They have a number of publications that would interest you and at their meeting you could share problems with other families.

DO'B

Original posting 15 Mar 97

  
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Last Updated: Tuesday April 06, 2010 15:08:54
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