Phyllis Kaplan’s 50th Diaversary Fundraiser for JDRF
“Unless you live with type 1 diabetes, you don’t really know what it’s like,” explains Phyllis Kaplan. “There’s a lot that goes on behind the scenes. Every day is like a game of chess, having to think several steps ahead at all times.”
At the age of two, Phyllis received a life-changing diagnosis that has helped her become the strong, compassionate woman she is today. Living with type 1 diabetes (T1D) since childhood, Phyllis has embraced unwavering commitment, resilience, and adaptability to navigate the challenges that come with this chronic condition.
To commemorate her 50th “diaversary”, Phyllis has embarked on a mission to raise $50,000 for JDRF. This global nonprofit is dedicated to advancing research and advocacy for T1D. Through her fundraising efforts, Phyllis aims to make a meaningful impact on the lives of individuals and families affected by this condition.
Phyllis Kaplan is commemorating her 50th “diaversary” by fundraising for JDRF.
“Often, everything looks fine from the outside, but it’s not. When you live with a chronic disease, it’s just another thing you have to deal with in addition to everything else.”
T1D is an auto-immune disease where the body’s immune system mistakenly attacks and destroys the insulin-producing cells in the pancreas. People with T1D need to carefully manage their blood sugar levels with multiple daily insulin injections or dose insulin with an insulin pump. Type 1 diabetes can impact the whole body with other serious health issues. Phyllis has faced many other medical challenges due to T1D with pragmatism and courage.
Phyllis has navigated diabetes retinopathy, a condition that can lead to vision loss. Her eye health was tracked once or twice a year growing up and stable for years. It was a slow progression that started with eye appointments every 3 months, then one fateful day the ophthalmologist determined it was time for laser treatment. Phyllis admits that she cried for days when that diagnosis came.
“It was rough,” recalls Phyllis. “I was worried about whether it would hurt, or if it would work. I also wondered what would happen if it didn’t work. The first appointment I had, I was so anxious and in my own head that I passed out right before the eye doctor was ready to start. We eventually got through the first session of about 500 burns.”
Despite the threat of this condition and the stress of this procedure, Phyllis continued to attend graduate school during this time. She went to her classes even on the same day she received laser treatments. Wearing protective sunglasses to evening classes when she had a procedure that afternoon illustrates her relentless spirit and unwavering dedication to her goals. The successful surgeries, performed by a skilled doctor, several times a week for over a year not only saved her sight but served as a profound testament to her fortitude. Phyllis continues to be closely monitored for this condition.
Type 1 diabetes doesn’t just impact the eyes. It can disrupt health in just about any part of the body, including the musculoskeletal system. Phyllis experienced this when she developed frozen shoulder, characterized by painful inflammation and limited movement of the shoulder joint capsule. Phyllis mentioned that she initially received an incorrect diagnosis of bursitis and was advised to address it through physical therapy, which did not help. A correct diagnosis was eventually made.
Phyllis skydiving.
She has also been impacted by trigger finger, a condition that affects tendons in the fingers and thumb. “My finger would click in one position and freeze which was extremely painful,” Phyllis explains. “I had surgery to resolve it, because the other treatment option was taking a steroid medication which can cause dangerously high blood sugar and is often a temporary solution for T1Ds.” Her doctor advised against it for those reasons. During our chat, Phyllis also shared that she has had three trigger release surgeries in the last 10 years.
“People don’t often talk about diabetes complications. We blame ourselves. I have to remind myself that I have T1D complications because I have diabetes. But you still have to live.”
The challenges of living with T1D also extend to everyday activities like exercise, which requires meticulous planning since physical activity impacts blood sugar. This careful balance speaks to the larger theme of Phyllis’s advocacy: while T1D is a constant and persistent presence, it can often be managed to a reasonable degree with determination and the right support. However, Phyllis advises that it is important to keep in mind that “Even with careful planning, some days can be harder than others and some days it feels as though diabetes has a mind of its own.”
“My diagnosis came at a time when there was no diabetes technology, no insulin pumps, no home blood sugar testing, no continuous glucose monitors,” says Phyllis. “The only option back then was to “manage” diabetes through urine testing. People often ask me how I did it, how my parents did it. I can’t really say for sure other than, we made the best of what we had because there really wasn’t any other option.”
“On average, a person living with T1D makes over 180 decisions a day related just to their T1D,” states Phyllis. “It’s sort of like having a full-time job with no overtime, no promotions, no salary and no days off. You manage having T1D as best you can because every day with diabetes is different.”
Throughout her life, Phyllis has been a fervent advocate for diabetes awareness and research. From advocating for her needs as far back as junior high school to participating in ten clinical trials, she has been at the forefront of advancing diabetes care. Four of the clinical trials were for an insulin pump which recently came to market.
“New treatments can’t happen without clinical trials, and clinical trials can’t happen without participants. As a longtime patient advocate, participating in a clinical trial is the ultimate form of advocacy for me.”
Phyllis's journey is a testament to the progress made in treating T1D over the past five decades. With advances in technology and research, individuals like Phyllis have greater opportunities to lead fulfilling and healthy lives despite the challenges posed by T1D. By sharing her story and raising awareness, Phyllis hopes to create a world where diabetes no longer burdens individuals and families. “I graduated from college at a time when there was no diabetes technology other than blood sugar testing. I graduated with my master’s degree while dealing with diabetes retinopathy and the possibility of losing my vision, and there was still no diabetes technology then. I’ve traveled all over the world and had lots of adventures including skydiving 2 years ago. I am also very proud of starting a camp program for adults with T1D. Overall, I try to celebrate the small things, and in this case, a very big one, my 50th diaversary.”
With an exceptional strength of character, Phyllis has always focused on persevering. She recounts “Diabetes hasn’t stopped me from accomplishing my goals. It has slowed me down and forced me to change my plans sometimes. But at the end of the day, I think it has pushed me to try harder.”
To learn more about Phyllis’s fundraising campaign and to make a gift visit https://bit.ly/JDRF50for50