As a child, I was fascinated by medicine and medical research. I was also a voracious reader and read every book I could find about medical breakthroughs. I often imagined myself peering into a microscope and making discoveries that would better humanity… perhaps even for type 1 diabetics like myself.
My childhood fantasy made sense. I was diagnosed with T1D in October 1957, just before I turned 3. I have spent a lot of time with doctors, I have lived with syringes, and I was used to using at-home lab equipment to test for sugar levels in my urine.
I eventually became a writer instead, but my avid interest in science and research of all kinds stayed with me.
When I found out about the Joslin Medalist Program in late 2010, I couldn’t send off the application fast enough. When the medal, given for living with diabetes for more than 50 years, arrived in the mail, I wept.
I think I was even more excited about participating in the research aspect of the program. I liked the idea that my experiences could benefit others and might ultimately help find a cure. It made me feel that, in one way, what I had been through would not be wasted; instead it could be put to good use. It’s also why I am donating key body parts, such as my pancreas, kidneys, heart and eyes, to the study after I die.
I was also curious about what the researchers would find out about me and how I was the same or different from the other approximately 850 people who have participated in the study since 2005. For example, I fit the profile of being of Western European stock and from middle-to-high income families. My parents are long-lived.
Like almost half the participants, I have changes in eyesight, and I am among the 87% who don’t have kidney disease. But unlike 60% of the Medalists, my pancreas is completely dead. It doesn’t produce any insulin at all.
Another reason I participated is the benefit from medical research throughout my life. It is certainly one of the reasons I am still here after nearly 57 years with T1D. For example, when I began losing my sight in the late 1970’s, laser treatments were literally “cutting edge,” and helped preserve my sight for more than 30 years. When I had a vitrectomy in 1982, the doctor used instruments that had just recently been developed.
Research also led to the development of glucometers, which have gotten much smaller and easier to use since I got my first one in 1981, more efficient insulins, and pump technology. All of this has made my life easier and enabled me to better control my blood sugars.
Participating in the Medalist study was easy. I filled out a lot of forms with questions about my medical history and lifestyle. Once the date of my diagnosis was confirmed, I spent several hours at the Joslin Diabetes Center. They did a glucose tolerance test, examined my eyes, feet, teeth, and took blood and DNA samples that are now on file at the National Institute of Diabetes. I was impressed that they not only look into the objective, measurable factors, but also the more subjective ones that are not so easy to catalog.
In May 2011, Joslin flew me from North Carolina, my home for 32 years, to Boston, where I grew up. During my college days at Boston University, I lived near Joslin, and I was able to spend time traipsing around my old stomping grounds. Joslin was also where I got my “diabetic training” It was the place that empowered me, even at a young age, to take responsibility for caring for myself and then taught me the skills to do it. I firmly believe that what I learned there has played a central role in my longevity.
Being a participant in the Medalist Study has enabled me, in a way, to achieve my childhood dream. I may not be the scientist peering into the microscope, but I have contributed the material that makes their work possible. I’m not the researcher; I am the research.
By Bea Quirk