Wrapping up our spotlight series on the patient panelists appearing at this week’s T1D Exchange Annual Meeting, we introduce Bunny Kasper. Bunny is an active diabetes advocate and JDRF volunteer from Hamden Connecticut. As a married mother of three sons and nine grandchildren (two of whom also have type 1 diabetes), Bunny was misdiagnosed for nearly 30 years.
“During both my pregnancies, I was diagnosed with gestational diabetes. Even though my first baby weighed 10 pounds and my twins weighed 8 pounds each, my blood glucose level was never tested again,” she recalled.
Bunny said that in her 30s and 40s she showed multiple symptoms of neuropathy, but they were never correctly diagnosed as diabetes complications. In her 50s, she was diagnosed with type 2 diabetes, but she struggled to manage her blood sugar and symptoms. Finally, a few years later she was diagnosed with type 1.
“Sadly, during those years I was sent to classes for type 2, and was never sent to any classes or educational sessions regarding type 1. As a result, my early years were filled with fear, as my body never cooperated with my assigned Diabetes Care program,” said Bunny. “I fought that by educating myself to gain a better understanding of my own body and how to manage my diabetes more efficiently.”
Today, Bunny uses a Tandem t:slim insulin pump and a Dexcom CGM, which she says have both greatly improved her blood sugar management.
“After acquiring a CGM, following my trends and understanding the effect different food had on my body allowed me to better set my basal and bolus insulin. And now that I’m on a pump, the ability to make use of extended blousing and temp rates, also, helps.”
Bunny adds, “[Before I had these devices] I dosed and corrected. Now I’m better able to control my dosing to fit my patterns, which makes life safer and more comfortable.”
However, she has had challenges with access as her husband’s Medicare coverage has not always covered these devices. She says insurance and availability of diabetes devices and supplies is one of her top two challenges as an older adult living with T1D.
“It was a terrible shock to have had such good equipment and then have them taken away,” she said. “It is also heartbreaking to see the new advances in the artificial pancreas, knowing that Medicare will not cover this either.”
The second biggest challenge for Bunny is the lack of T1D understanding in the public and in the medical field. She said during a recent stay in the ICU, her husband’s nurse said he needed insulin, but not to worry, because “adults can’t get T1D.” She also said her own primary care physician and a registration nurse at her local hospital have made misinformed statements about diabetes and her insulin pump.
“When I meet with physicians regarding health matters, I more often than not find myself educating them about my diabetes,” said Bunny. “We desperately need to educate our educators, the medical community and the public.”
Bunny runs a local adult T1D support group for JDRF, and mentors many families who are newly diagnosed or are struggling with the disease. She and her sons and two grandsons ride in the JDRF Ride to Cure each year, raising $250,000 to date in funds.
“Most don’t know anyone else with this disease,” she said. “Showing these badly frightened families that a good life can still be had and sharing some of the benefits of learning to live with the disease has not just helped them, but also has helped me.”
We asked Bunny for a few pieces of advice for her fellow T1D warriors:
- Live a full life by learning how to manage effectively.
- Do not become the diabetes police. Do not punish yourself for having diabetes by restricting your life.
- Understand that there is no way to be perfect in diabetes care—forgive yourself for mistakes and learn to accommodate any situation.
- Each test number is just one number.
- Find a diabetes community.
- Never be afraid to be honest about your feelings and frustrations.
- Advocate and educate whenever you can. When people tell you about ridiculous cures or that it is your fault you have T1D, see it as an educational opportunity.
- Keep a sense of humor.
- Trust your instincts!
Bunny has such a good perspective on being a senior with T1D. She reminds us that seniors with T1D have many complex issues as diabetes takes a toll on so many aspects of life. She also pointed out that many senior with T1D are also living with partners who are aging too, and that may present other stressful challenges to their lives.
“This will also impact their T1D, so when dealing with a person with T1D try to look at all aspects of their lives.”
We are grateful for Bunny’s wisdom, and are looking forward to hearing much more from her at the Annual Meeting.