I am blessed to have access to a wealth of resources and emotional support to help control my diabetes. Sadly, this is not a universal right. Many people living with diabetes either lack access to insulin and glucose testing supplies, or lack the emotional support we all need to fuel us for the diabetes fight. When I was diagnosed with type 1 diabetes while a 25-year old third-year medical student, I was scared out of my mind as so many of us are. I now count my blessings to have both the medical and social resources I need to not only survive, but to thrive with diabetes. However, I have also become progressively aware that this is not the case for so many others, which led to my founding Marjorie’s Fund.
One of the more poignant stories about the plight of many people with type 1 diabetes is that of Marjorie, whom I met while working in Uganda in 2010. Marjorie was three years old when she was diagnosed, and just 29 years old when she died, having succumbed to diabetes-related kidney failure. Unlike so many people with type 1 diabetes in Uganda and other parts of the developing world, Marjorie was one of the lucky ones. Marjorie had been provided enough insulin and glucose testing supplies to allow her to survive. Yet, Uganda is starved for resources that would have allowed Marjorie to keep her blood sugar levels under good enough control to avoid diabetic complications.
While she awaited a kidney transplant—a treatment she never received—Marjorie relied on weekly dialysis treatments to stay alive. More often than not, she could not afford such treatments, and faced a preventable death. Yet throughout this very difficult time, Marjorie continued her efforts to educate both patients and healthcare providers on how to better manage type 1 diabetes, in hopes of preventing others from suffering her fate. Speaking at various medical conferences, she recounted her story, and fought to change a system which had limited her own care due to a lack of resources.
Through this was born Marjorie’s Fund, a not-for-profit I started in 2011, which strives to support and improve diabetes care, education, and research in resource-poor settings. The program fulfills this mission through education of patients and healthcare providers on prevention of diabetes complications, improving sustainable access to diabetes treatment and testing resources, and support of research of understudied populations aimed at improving the epidemiology of type 1 diabetes, and toward the prevention, treatment, and cure of type 1 diabetes.
Marjorie’s Fund currently has projects in Rwanda, Uganda, Ethiopia, India, and New York City. Recent projects include support for the Rwandan Diabetes Educational Center, an initiative started by the Rwanda Diabetes Association (Association Rwandaise des Diabetiques) to develop a sustainable model for the care of 1 diabetes patients in Rwanda. Graduates will be expected to be proficient in diabetes self-management skills, have learned how to grow diabetes-friendly foods, and have learned a trade to help support the cost of their insulin and diabetes testing supplies. We also support similar educational initiatives, along with research initiatives, in Uganda and Ethiopia. In both India and New York City, we are working to build a larger support network for adolescents and adults living with type 1 diabetes.
Whether it be because of lack of social support or diabetes treatment and testing supplies, many people are failing in finding that sweet spot of diabetes control which will allow them to thrive with diabetes. We are working to develop sustainable ways to promote good diabetes control, allowing all of us to live long, healthy, productive lives and thrive with type 1 diabetes.
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