Tuesday, March 25, 2008

TEDDY

In my packet of hospital paperwork for the new baby, there was a brochure from the TEDDY study, which seeks to determine the cause(s) of Type 1 diabetes (formerly known as Juvenile Diabetes). TEDDY stands for The Environmental Determinants of Diabetes in the Young.

Participation will consist of giving them permission to have some of the blood taken from the baby at birth, and follow up appointments for many years. I'm going to look into this more, but honestly, it might be worth participating if the baby qualifies.

Brendan got Type 1 diabetes at the ripe old age of 29, very late onset of the disease, and because of him, our kids have a significantly higher risk of getting it themselves, about a 6-10% chance. (The average risk is about 1/300.)

Very interesting study. If you are reading this and have any personal knowledge about the study (good or bad), I'd appreciate hearing from you very much!

6 comments:

Mrs. C said...

I wonder if they gave you this brochure b/c of the increased risk in your family? I have a two-month old and never heard about it. I live in Missouri.

Rational Jenn said...

Hi Mrs. C! I'm not sure how they decide who gets the brochures. My neighbor had her son participate a few years ago, when he was born. But I think that might have been for a different part of the study. They have no risk factors for diabetes and his screening came back normal.

I'm not sure my OB knows that my husband is diabetic. So I think it might be random, or something going on in this area.

We are still trying to decide what to do and will probably call the people at TEDDY in the next few weeks to get some more information. I'd say we're leaning towards doing it though.

Thanks!

LB said...

I did some checking with the American Diabetes Association, and found this article: http://diabetes.diabetesjournals.org/cgi/content/full/54/suppl_2/S25 - it’s kind of fascinating. The TEDDY website itself does show where the testing centers are, so that may account for the where it’s being pressed. It seems the study is done at little risk to the little one but has the potential to be a piece in completing the puzzle in the long run.

My brother was diagnosed with type 1 when he was 11 – 37 years ago.

Rational Jenn said...

LB--thank you so much for the link. We'll check it out soon.

I agree, from what I've read, there is little to no risk to the baby--just blood work, which will be a pain, of course. And there will be work for us, too. It feels strange to think that I might be making such a decision for one of my kids, but honestly, I've been trying to get Ryan into a food allergy study, too, so it's kind of the same thing.

One of the most frustrating things for us when Brendan got his dx was the fact that nobody could tell us WHY it happened, especially since he was such an unusual case. We were told that he probably had a virus which kicked off a genetic tendency which told his body to off his beta cells. It's the best they've got. (Now that I think about it, we have suffered similar frustrations about the food allergy thing--nobody really understands WHY it happens.)

I hope your brother is in good health, especially after 37 years! One advantage to Brendan's late dx is the fact that at nearly age 37, he has only been dealing with this for 7 years, whereas most diabetics his age have been doing this for 20 or 25 years or longer.

Thanks again for the link!

LB said...

Yes, my brother is quite well which is relatively amazing given his rather loose approach to life. I'd say he's better off than my parents, even, who both developed type 2 later on and then had to restructure their lives. My mother is a brave soul though, who got the pump at age 69.

Despite not knowing why diseases/allergies suddenly occur, which I agree is maddeningly frustrating, I am encouraged by the fact that treatments, even for cancer, seem to consist of knowing how to live well with these diagnoses rather than the scary unknowns they once were.

Rational Jenn said...

Despite not knowing why diseases/allergies suddenly occur, which I agree is maddeningly frustrating, I am encouraged by the fact that treatments, even for cancer, seem to consist of knowing how to live well with these diagnoses rather than the scary unknowns they once were.

I agree. As bad as diabetes is, there's so much in the patient's control, especially for Type 1s. There's much a person can do to maintain their health, even when things sometimes get wacky with the blood sugar or mistakes get made. Unlike other devastating diseases which much be managed more by other people--docs, nurses, etc.

And really, B picked a good time to get diabetes, with all of the testing options, the pump, etc. that will help him stay healthy. It must have been much harder to deal with when you brother first got it.