When I Speak What I Say

Maybe you call the pediatrician first, but you’re headed to the ER. Now you are worried for the health of your child. It is then and there, while you think your child is about to die, that you find out your family has been handed a life sentence.

I spent Saturday evening at the Omni in New Haven. It was the Juvenile Diabetes Research Foundation’s annual gala. This was number 13. I’ve been to them all. I am the emcee.

There’s something I say every time I speak on behalf of JDRF. It’s a part of diabetes most people don’t know.

First, the easy stuff. Thank God we have insulin. It is not a cure. It is a treatment.

Even with diligent adherence to doctor’s orders a person with Type 1 Diabetes will live a shorter life–over a decade shorter. They stand a high risk of adult onset blindness and amputations. You really don’t want to know.

Every family finds out differently, but there’s one scenario that keeps coming back.

The child is young, a year or two. Something’s wrong. If you’re a parent you understand what I’m saying. The child is lethargic, listless, moping.

There’s no real symptom you can tell a doctor, just general things a parent notices.

And then all hell breaks loose!

Your child spikes a fever and gets really ill. Maybe you call the pediatrician first, but you’re headed to the ER. Now you are worried for the health of your child.

It is then and there, while you think your child is about to die, that you find out your family has been handed a life sentence.

Life becomes more cumbersome… more burdensome. There are pumps and sophisticated testing for all, but you’re still poking a hole in your skin to get blood 5 or 6 times a day!

If you’re a kid trying to blend in being diabetic is your nightmare. At every turn you’re standing out or needing special attention. Some friend’s parents might not want the responsibility that comes with you visiting.

A child is diagnosed with diabetes, but the family participates. Nothing is done without considering the disease first.

And diabetes will still diminish your quality of life and then life itself!

What the JDRF does is try and buy a cure. It’s that simple. The money we raise pays salaries for doctors and labs around-the-world. JDRF provides some of the grant money you hear about so often. Research follows money.

This disease will be cured. It will be cured in the short term. Everyone understands what needs to be done.

Some of the best proposals involve testing an artificial pancreas. It’s a closed loop system running silently inside you. It tests blood sugar then parcels out the correct amount of insulin all in real time.

The exact method the pancreas will use to do this and the full understanding of exactly how much insulin is right are still being engineered. There is no tolerance for fault in the finished design.

Last night after dinner a young woman with Type 1 Diabetes spoke for a few moments. She was moving. It’s tough not to be involved with motivation like that.

The gala honored Al Subbloie – President & CEO of Tangoe. I first knew them as a tiny company in a walk-up office over Roberto’s Restaurant on State Street in New Haven. Not so tiny any more. He seems like a very smart guy. Impressive.

5 thoughts on “When I Speak What I Say”

  1. I have several friends with children who have Type I Juvenile Diabetes. I’m sure they know it, but I didn’t know the dire risks these young people face nor that their lives can be shortened by a decade. I do know of the struggle to live with this disease. It’s difficult to make the young people test and eat properly when they are not at home with their parents supervising.

  2. A suggestion for your science segment – I’m sure you’ve seen the ads on tv with the Indycar driver who’s diabetic and is sponsored by the insulin pen company. Most of us “get” that, how the pen works and is administered. However, my understanding is that they have some way of monitoring his blood sugar constantly when he’s in the car. I would love to find out how that works.

  3. Thanks, Geoff, for all the work you’ve done for JDRF over the years. It’s not easy, even as an adult, living with Type 1m but it’s doable. That which does not kill us, makes us stronger. 48+ years since diagnosis.

  4. I lost a close friend to this disease at age 34. He was a funny, laid back, silly teacher to many young people. He had that absent minded professor way about him. We always joked that someday he would forget he was diabetic and forget to get his supplies. He used to say “as long as I don’t forget that I love dunkin donut coffee,hee hee”.

    That is basically what ultimately happened. He was alone in his home and it assumed he slipped into a diabetic coma. No one knew until it was too late. A great presence on this earth was taken from us too soon. This is such a serious disease that most of society does not realize just how serious it is. Thanks for the article! RIP Paul J.

  5. My niece w/ Type I Juvenile Diabetes had the identical story as you described when she was diagnosed at 18 months — now she is 24 and thanks to research, has a pump… and is doing well. She is even talking about possibly having a child – which was considered unwise a generation ago, but possible thanks to benefits which fund research.

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