Living with Type 1 Diabetes, and Taking Action
Phyllis Kaplan knows a thing or two about living with type 1 diabetes. She was diagnosed 42 years ago and has been finger pricking and insulin dosing ever since. She is an active fundraiser and supporter of JDRF, the leading global organization funding type 1 diabetes research, and is passionate about the power of personal connection in approaching life with diabetes. Within the last year, she discovered the incredible online community of diabetes patients and supporters, where we at TrialReach met Phyllis and learned her story. It’s a story of empowerment and education and altruism. We love it so much that we just had to share.
In December of last year, Phyllis joined a #DCDE Twitter chat organized by TrialReach and our friends at Diabetic Connect. During the chat, she learned about some of the benefits of clinical trials and about our newest product, TrialReach Match™. Phyllis says she had been thinking about taking part in a trial — she’s always wanted to do more to advocate, and she believes being part of a trial fills that need. She’s tried to get involved with the artificial pancreas trial at Boston University in her area — but, as she says, “take a number, right?” She searched a few times on www.clinicaltrials.gov, and each time she found a trial, she had the same experience. “I couldn’t tell: do I qualify? Do I not? When I saw Boston, I’d call, but no one would answer. It was frustrating.” She found it next to impossible to find and take part in a clinical trial.
So on that December evening, Phyllis visited www.trialreach.com and entered her location into Match. In a few minutes, she had matched to a few trials in her area, and one particularly caught her eye. It was a mini-dose glucagon trial at her home hospital, Joslin Diabetes Center. The time commitment was just a few months, and she felt the treatment being tested was not too much of a risk. She got in touch with the researcher and signed up right away.
Phyllis was pleasantly surprised by her trial experience. She says it was really interesting to get an inside look at the research happening at Joslin: “You always hear research is being done, but when you can actually see it listed out on a white board in a lab, it feels different.” And, medically, she says the trial “forced me to look at things related to my overall health that I’ve eased up on. I was a lot more in tune with my overall health while I was in the trial.” Her advice for people looking for a trial is to ask questions: “I would encourage anybody to really listen and find out as much as you can before you sign up.”
She’s enthusiastic about continuing to contribute to the body of diabetes research by finding and taking part in additional clinical trials. She says, “It’s great to see so much in motion, and to know how many people are focused on working to bring better diabetes management tools to market…we’ve come a long way in the 42 years I’ve had type 1 diabetes and it’s exciting to see what happens next.”
You can join Phyllis in contributing to the development of new therapies for type 1 diabetes! Learn more at www.jdrf.org/research/clinical-trials/ or www.trialreach.com.
Originally published at blog.trialreach.com on July 14, 2016.
