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Well, just wanted to share how excited I am to be participating in the Joselin Diabetes Center's research study for those that have had diabetes for 50+ years. I am a "Medalist" so was invited to participate. My hope is to help others with this condition, in some small way, however I can by my participation. btw, Joselin pays your airfare to and from Boston and 1 night's stay at the Holiday Inn. So if you've reached 50 yrs with diabetes or are anywhere near, I encourage you to apply for your medal. I'll update when I return. And thank you Richard for letting me know about this!!
wow, let us know all about the experience, I'll be there in 5 years.
Wow, Linda, that's really cool! I hope it's a great time. let us know how it goes.
Hi Linda, thank you so much for becoming a Medalist, and participating in the Study!! There was only one thing about the participation that was not good for me. They want you to do a glucose tolerance test (GTT) in the morning before you have anything to eat. You are supposed to eat twice as many as the usual number of carbs for dinner the previous evening. You take your insulin as usual that evening, but only take your bolus the next morning. After I drank the glass of glucose liquid, which they called a milkshake...LOL, they tested my BG every 30 minutes. My BG was in the 90s before I drank the stuff. It rose very fast after drinking the glucose. I was already very high at 30 minutes, and 200+ at one hour. Then I was 300+ at 90 minutes. I felt very sick, and had to go for a thorough eye examination. I was out of it during the eye exam, which was the last part of the study. I think my eyes were not in very good shape at that time. If I had known about the procedure beforehand , I would have requestd the eye exam be done before the GTT.
Since my BG was still rising 90 minutes after the GTT, my pancreas was not producing any insulin. Some participants saw their BG drop on the 90 minute test, which means they produce some insulin, even after 50+ years of T1. Some medalists have donated their bodies to the study. The donors who have died were examined. Their internal organs were examined, and living beta cells were found. This is only one surprising discovery that has resulted from the study at this time. More than 750 medalists have participated. They initially wanted a total of 1000 participants.
Linda, if you attend the Medalist meeting at Joslin in 2013, maybe we can meet each other. that would be very nice!
Thanks for the info Richard. I really doubt I produce any insulin so expect my result will be similar. I'm on a pump so don't know how I can stop taking my basal rate. I DO plan on eating and bolusing my way through Boston the next day though as I hear the food is out of this world!! So I hope I recover in time to really enjoy myself! I'll report back. And yes that would be so much fun to meet up in 2013. Luckily this time, Joslin pays for the airflight for both my husband and myself. (He will be a control subject) since he doesn't have diabetes nor any family history. Its costs about 800 - 1000 to fly back there from Calif.
Linda, I made a typo, you are supposed to take your BASAL on the morning of the testing, but do not take your bolus since you will be fasting, and not eating until a couple of hours later. That will makes the GTT results accurate.
good for you ! I hope to do the same in 3 years. Will be looking forward to your update.
Enjoy your trip. have been to the Joslin clinic a lot before moving to nz. Boston is nice. Spent 35 yrs there. Haven't been a diabetic quite as long (30 yrs,), but know the Joslin is a great place among all the hospitals in Boston. Enjoy!
Linda, that's awesome! I tried to fill out the form for the 25-year club at one point, but got stumped on the bit about who diagnosed my diabetes. I can't recall (I was really sick at the time) and we had just moved to a new city. I was hospitalized three days after we moved there and we were only there for 9 months. I have no clue who that family practice doctor was now, 30 years later! I'm also fairly certain he has retired, whoever he was. Frustrating!
Hi cchelms, I am a Joslin medalist, with 66 years of type 1. I did not have proof when I applied for the medal. I found that I could get a couple of people who knew me during the time I was diagnosed to write letters. Teir letters told things they remembered about my diabetes back then. My sister and cousin sent letters to me, and I included them with my application. I received the medal about a month later. Then I participated in the Joslin Medalist Study in 2009. When you have the 25 year certificate, you will automatically receive the 50 year medal 25 years later, without having to apply again.
Thanks, Richard. I can certainly get my mother to write a letter. She remembers all that stuff pretty vividly. :) This is great to know!
I had my current Dr. write a letter, as she has my own account of my documented history as well as a family member write a letter. Like Richard said, they'll accept most anyone who knows you and can document diagnosis. I also sent in my Medic Alert bracelet documentation by going on their website to print my first date of membership. Even though I had let the membership lapse for a while, the first date (1961) was in their documentation. My records from the hospital where I was diagnosed are long gone and I can't imagine a kid keeping that stuff!! So I think Joslin understands all that. My visit to Boston was wonderful! I'm still waiting for my test results although I doubt my beta cells are functioning at all. Will report when I find out. Best of luck to you and I would certainly encourage you to get your 25 year cert. Its 25 years of hard work!
Thank you, Linda. There should be plenty of anecdotal evidence supporting my diagnosis, at least. I hope you find out your beta cells are still functioning a bit. It seems like even a tiny bit of production really helps to protect us from the worst ravages of Type 1 over time. I was in a clinical trial about 12 years ago where they did testing to see whether I still had beta cell function. At that time, I did have a small amount. Not sure how long that lasts, though. Since it's been 30 years now, they may have stopped functioning. :) Thanks again!