Susie Perkowitz has an incredible message that must be heard by everyone.
Diabetes is a condition that touches so many of our families and Susie and her “fearless” approach will make you sit up a little taller in your seat and want to become a part of a movement that must take place. Her passion and fighting mentality are inspiring!
Susie at the TransRockies Ultramarathon prior to her diagnosis
“I passionately believe we have the ability to cure diabetes if we fund the researchers who are doing the brilliant work to move the needle towards that goal.”
Susie speaking at the ADA 2018 conference
Hi! I’m Susie. In 2013, as I was running a 120-mile ultramarathon, I started experiencing strange symptoms. I completed the race – but afterward I felt so sick I went straight to the ER to make sure I didn’t have a pulmonary embolism. To everyone’s surprise, it was discovered that I had diabetes.
At first it was suspected I had Type 1. When I tested negative for autoimmune antibodies (a key marker for Type 1), it was assumed I had Type 2 and I began treatment. At the same time, I was diagnosed with mild-moderate diabetic retinopathy.
Treatment for Type 2 diabetes made me very sick and I simply didn’t respond to the treatment. By 2016, my diabetes was out of control and my eye disease had progressed to severe diabetic retinopathy with macular edema. I was going blind, and it was irreversible and unstoppable. It was a very scary low point.
Luckily, my medical system had begun a new program in personalized medicine, and I was referred to an endocrinologist who specialized in atypical diabetes. She took my history, and said I met the criteria for testing for MODY, a kind of monogenic diabetes. Bloodwork confirmed her instincts and the final step was genetic testing. Within weeks, I finally had the correct diagnosis: HNF4a MODY1 Monogenic Diabetes.
It was a life-changing moment! With the correct diagnosis, I finally got the right treatment. And all it took was a doctor who knew the right questions to ask and the right bloodwork to order.
Since then, I’ve become a passionate diabetes advocate. In 2018, I spoke at the American Diabetes Association’s Scientific sessions. Now I’ve founded Done with Diabetes, a not-for-profit with the primary goal of raising funding for diabetes research. Another goal is to educate, so that nobody else has to face blindness like I am, simply because they were misdiagnosed. You can read more about our Mission here.
Diabetes is an insidious disease that impacts all of us. I passionately believe we have the ability to cure diabetes if we fund the researchers who are doing the brilliant work to move the needle towards that goal.
I cannot do this alone. You can make a difference. Please donate today, so we can be Done with Diabetes as soon as possible. Thank you!