The Joslin Experience

My mom was diagnosed with Type 1 when she was five years old back in 1958. She was recently able to travel to Boston to the Joslin Diabetes Center as part of the 50-Year Medalist Study, after being encouraged by her current endo Dr. Fred Whitehouse at Henry Ford up in Detroit. This is her account of that experience.

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The 50 Year Medalist Study hopes to test about 1,000 people. I was number 652 in the testing process. Joslin has given out approximately 1,500 of the medals so far. When I received my medal in 2008, I did not volunteer to participate in this study. Since then, I've been encouraged by several people I hold in high regard to do so. Upon thinking about it and talking to the study coordinator, it seemed like maybe something good would come out of it.

Why are there people after 50 years with few or no complications and people after 10 years with major problems? Do some of us hold answers to things like this? Maybe we do and maybe these studies could lead to something positive in the future. When the study was first started, they didn’t really know that after 50 years, Type 1s produced any insulin – now we do, as a result. You have to look at this as a hopeful and positive experience, and think that something useful and good will come out of it.

That’s why I participated.

Before you go, you’re sent a detailed questionnaire about your life and medical history that takes about two hours to complete. You are flown to Boston and put up for one night in a hotel near the Joslin. You must fast for 10 hours before the testing. After you enter the Joslin Center, your height and weight are taken. You are given an ECG to study your heart function.

Next, the test called a Mixed Meal Tolerance Test (MMTT) is done. For this, an IV is inserted into your arm with a four line port. One line feeds saline through to keep the line open. The other three ports are used to hook blood tubes in at half hour intervals to withdraw the many tubes of blood that are needed. The total amount of blood taken is about 158 mLs over the two hour period. At the start of the testing, your insulin pump is stopped. Then you are given a Boost-type milkshake to drink within a 3 minute period, and the initial blood is taken. Blood is then taken every half hour for two hours total, your pump being off the whole time. The purpose is to see if your body makes any insulin. Some Type 1s, even after 50 years, still make insulin.

You also provide a urine sample. Another sample kit is shipped to your home for you to mail back a test tube of urine for a second test. These are for kidney function tests. Your eyes are dilated and examined by the retinologist, including having “eyeball pictures” (known as Optical Coherence Tomographs) obtained on each eye.

At the end of the testing that lasts approximately five hours total, you’re given a report from the retinologist and a copy of pretty pages of printouts of the eyeball pictures. The rest of the test results are mailed to you in about 2 weeks. This includes the lab work that was done, including the follow-up urine you mailed back to them.

You’re given the results of the MMTT, showing if you make any insulin. You are not given the results of this one test in writing but only orally. The reasoning behind this is that it is a very specialized c-peptide test. If you might be producing insulin and the results were given to your physician’s office, Joslin wouldn’t want anyone to ever be denied a pump because of this specialized test. Some insurance companies use a c-peptide as one criterion for a pump. Seems like a logical answer to me, knowing how insurance companies work. But this wouldn’t be a worry for me, as I didn’t make enough insulin to even register on the test.

Being at the Joslin is a unique experience for someone who has heard for many years that it is the epitome of good diabetes care. Although the current site is not the original location that Dr, Joslin lived and practiced (it’s about three miles away), there are some brilliant people working there today.

It is a large complex and it would be wonderful to have one place to go for everything – eye care right in the same place as the endo care. Although I live in a metropolitan area, my care is very spread out. It seems ideal to have it all together.

The 50 Year Medalist Study is a continually-evolving entity. When it started in 2005, blood tests and an eye exam were all that were done. The MMTT was added in 2009. They have done approximately 150 MMTTs to date. Each time something is added to the study, a new grant has to be applied for. So it’s not a quick process to add another test in. Once you become part of the study, participants are kept advised of new findings and results which come out of the study. They are also advised when new things are added into the study.

Ideally, Joslin wants you to return every three years to be retested so they can keep a running log on how you’re doing and what’s happening with your health. Also, if new tests are added, they will be able to give you the newly added tests. Another thing that is discussed briefly with participants is the organ donation program of the 50 year medalists. If you are willing to donate some of your organs upon your death, Joslin is doing studies of them. Papers are given to participants to take home and review for consideration.

Upon completion, I was given a T-shirt that says “50-Year Medalist” on the front and “50 years of success with Type 1 diabetes” on the back.

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Thanks for sharing this, mom. Your story and what I've heard from others, including a video put together over at Six Until Me, is very inspirational. Though I'm only in my 27th year of D-Living, I hope to reach that half-century milestone at some point and can only imagine what we'll know by then because of all this ongoing research now. Thanks for being a part of that bigger picture, and for what you do to help, love, and support me - then and now.