From Staunton, Virginia, USA:
I am a 31 year old white female who was diagnosed with mixed connective tissue disease approximately 15 years ago. My Mother's family has an extensive family history of autoimmune diseases. My mother is 55, is on her third dual chamber pacemaker, and has celiac syndrome and dermatitis rapidiformus. Her two sisters have lupus, rheumatoid arthritis, and other autoimmune illnesses. Each of those three women (Mom and her sisters) have at least one child with an autoimmune disease. Two years ago, my sister's (who is the healthiest one of all!) son was diagnosed with type 1 diabetes at the age of almost five.
Let me point out two very important facts. First, he is the first male to be come ill, and second, he is also the first person with diabetes. (I know that all autoimmune disorders are related.) Here comes my part in this health saga. About six months ago, my two year old little girl (just turned 2!) was diagnosed with type 1 diabetes. I am flooded with questions, but I will limit it to this:
I have grown up a sickly person, and it is killing me knowing first hand what she is in store for. Don't misunderstand! I am the most positive person, and this is what my daughter sees, but I am also realistic. She is Incredible and has been checking her own blood sugar for a few months already! Remember she is only two. I can't sit back and do nothing. Do you know of anyone interested in studying our family and the obvious genetic connection with us? I want our health problems to help in some way. Please let me know who I can contact.
[Note: Generation #1: My mom was diagnosed at age 30 (childbearing). Generation #2: My cousins and I were diagnosed at age 13 (teens). Generation #3: My nephew and daughter are toddler/ preschool age. My six year old son is very healthy.]
At a minimum, I would recommend you and your family be studied through the DPT-1. Please call 1-800-425-8361 if you are interested in having yourself of members of your family screened. The toll-free number will also help guide you to the closest study center.
Additional comments from Betty Brackenridge, diabetes dietitian:I will leave the response to your main questions to the experts in those areas, but just wanted to send some positive support to you and your little one. This has got to be quite a burden to you all, especially in light of all the other health issues flying around! I'm sure you've heard it from others, but I wanted to specifically address your concerns about your child with diabetes possibly sharing your experience as a "sickly child."
Happily, with today's tools, youngsters with diabetes can be the farthest thing from "sickly." Not to discount the amount of work and attention that accomplishing that takes! If you haven't already accessed good diabetes education from a pediatric diabetes team, I urge you to do so. It will make all the difference. I'd also like to recommend a book I co-authored with Psychologist Richard Rubin called Sweet Kids: How to Balance Diabetes Control & Good Nutrition with Family Peace. These are lot of practical support to be found there. In addition, please feel free to use the great resource of parents, chats, stories and information here at Children with Diabetes. There's months of reading there when you've got bits of time to chip away at it.
Additional comments from Dr. Stuart Brink:There is a lot of research going on about autoimmune disorders. Your family sure has a lot of them and there is probably some genetic predisposition that is passed along. Current information suggests that something in the environment then acts as a trigger. As we understand more about the human immune system and the HLA genetics systems, we'll have more answers. For now, however, it would be best for you to ask this question to either your own doctor or your daughter's diabetes team since they would both know what is available in your area.
[Editor's comment: I would suggest contacting a genetics counsellor at the nearest university medical center. The genetics department will know what studies your family might qualify for. SS]
Original posting 15 Jan 2001
Posted to Genetics and Heredity
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