Thursday, September 1, 2011

JDRF Promise meeting

Angel, Lara, Lori, Me, Rep. Latta
I had a JDRF Promise to Remember Me meeting yesterday with my State Representative Bob Latta.  It was again a very pleasant and rewarding experience.  I was very pleased with his response to our stories.  He asked some very insightful questions and seemed truly interested in what we had to say.

I had three people with me for the meeting.  Lana spoke about her experience with having a daughter who is now 4, but was diagnosed with Type 1 at 2 years old.  Angel and her Mom, Lori told of her experiences growing up with diabetes.  She was diagnosed at age 3.

Lara spoke first and told of having to be available constantly to monitor her daughter Addison's blood sugars.  It was difficult to work or to get away with her husband or to get a good night's sleep.  She told about how she could tell when Addison was low because her activity level decreased dramatically.  It was an emotional story about a situation that seems so unfair on so many levels.

Angel is a college student and had organized her thoughts on paper.  She started reading from her notes about difficult aspects of her life with diabetes.  Rep. Latta interrupted her with questions that brought out some very interesting stories about how hard she would try to keep her blood sugars under control, but how impossible it seemed to be.  She talked about her dismay with her high A1c and tried to explain what that was and what the implications are of having it be too high.  She spoke about how hard she tried to lead a normal life, but how diabetes makes that difficult.  She also spoke of how hard it is to tell people about her diabetes.  As a college student, she can't rely so much on her parents and needs to rely more on roommates and friends.  That is difficult at her age when independence is everything.  Rep Latta asked her several questions throughout her talk and I'm not sure she ever made it back to her prepared speech.  But that, I think is a good thing in that it brought out some interesting situations.  She was very compelling as was Lara.

I knew we were running out of time.  We were supposed to hold our meeting to 15 to 20 minutes.  So I only mentioned that I used to be just like Addison and Angel.  Until my transplant.  Rep Latta was very interested in the transplant process and how the FDA would be involved in getting this approved for all diabetics.  We talked about the surgery and the results.  I explained how I had two years with no insulin, but that most people get at least 5 years.  That the research was indeed moving forward.  I mentioned the article about the cost-effectiveness of islet cell transplants vs. insulin therapy.   He told us that he is on a Healthcare committee and comes across questions like this.  He asked for some more information so that he can better understand it and be prepared to discuss this if it comes up.  This, of course, got me very excited to tell more about it.  I also promised to send more information to his office. He was also interested in the insulin pump and continuous glucose monitor.  I explained how they work, some of the mechanics, and how they are attached to the patient.

Between my interesting partners and Rep. Latta's involvement in our discussions, it was a very pleasant and successful meeting.


Kristin said...

Sounds like a great meeting! And very lucky that your rep is on a healthcare committee - they need to hear stories like yours!

et63 said...

This is a GREAT post!! I would love to be able to hear the speaker you will have at the symposium and where the stem cell research is at in this country. BTW - you look wonderful!!!
In good health!!