Asha Agar Brown

AshaName: Asha Agar Brown
Hometown: Minneapolis, Minnesota
Diabetes Type: 1
Current Life's Work: Founder of We Are Diabetes, Actress, School Nurse

My name (Asha) actually means Hope in Sanskrit. Hope is what kept me alive during some of the darkest times of my life.

I was diagnosed with type 1 diabetes at 5 years old. Throughout my childhood, diabetes was simply a way of life because my father has had type 1 most of his life as well. I didn't mind being a little different than my friends and never had a problem explaining type 1 diabetes to anyone who had questions. In fact, diabetes never created an obstacle in my life until I was old enough to understand that sometimes I had to rest when I wasn't tired, or eat a snack when I wasn't hungry; sometimes my choices were not my own to make.

As a dancer and actress since the age of 5, I lived for movement and my body's ability to feel good in its own skin. After reading many articles and books that gave a daunting account of weight gain associated with insulin resistance and diabetes, I felt the first stirring of resentment towards a disease I felt was dooming me to an inability to have the physical strength and shape that I knew I deserved and could achieve. And so I started to omit insulin occasionally when it was "necessary" to get things done.

Unfortunately, my story is not as unique as one might think. Once solid in my recovery from diabulimia, I started to seek out other type 1 diabetics like me who struggled with the fact that in order to take care of our chronic illness, there was a necessary focus on food, numbers, and control that could easily manifest into a deadly eating disorder. I discovered that therDiagnosise were a staggering amount of type 1 diabetics struggling with insulin omission and that their pleas for help and support from their endocrinologists, insurance providers, and even their own families were unheard.

Type 1 diabetes teaches you to be proactive; you can't just "run out" of your life-supporting supplies, you have to plan ahead. Type 1 diabetes also teaches you (sometimes after learning the hard way through many mistakes) that being open and honest to the people around you about what you need makes everyone's lives a little easier. I saw a disturbing lack of resources available for type 1 diabetics who suffer from eating disorders and I decided I had to do something about it. When your glucometer reads 45 you don't just shrug your shoulders and pick up a book; you move into ACTION. Ironically enough the ability to take charge and spring into action to manage this difficult disease was the very reason We Are Diabetes — one of the only online resources available for those who are struggling with diabulimia — was born.

We Are Diabetes (wearediabetes.org) was founded by myself, my co-founder Erin Williams, and my devoted husband in January 2012. We have created many unique resources not only for those who may be suffering from diabulimia, but also for any type 1 diabetic who may feel a sense of isolation or "diabetes burnout." Type 1 diabetes only makes up a mere 5-10% of the entire diabetes population. It is still misunderstood by the general public, and unfortunately, even by some healthcare professionals. Many of the issues we face as type 1 diabetics are invisible; our friends and co-workers don't understand how hard we work on a daily basis to feel "normal." We Are Diabetes strives to be a place where type 1 diabetics can feel understood and supported.

RecoveryThere is growing awareness among diabetes healthcare professionals about the risks of those living with type 1 diabetes developing an eating disorder. However there is a substantial disconnect between the knowledge and understanding of type 1 diabetes at most eating disorder facilities. The dual diagnosis of a chronic illness like type 1 diabetes and an eating disorder is extremely complicated and demands a proper type of professional care; both for the emotional and the physical aspects being treated. We Are Diabetes has networked with specific treatment centers across the United States that have the experience and the expertise necessary to help those who are suffering from diabulimia. There are many options available for someone who is seeking help. For more information about what kind of support may be available in your area please email info@wearediabetes.org.

Asha is the Founder of the organization We Are Diabetes; an organization devoted to providing support for type 1 diabetics who struggle with an eating disorder. She is a member of Diabetes Advocates and has devoted the last four years of her life to spreading the awareness of the deadly eating disorder diabulimia that has become prevalent in the type 1 diabetic community. Asha has worked first-hand with families, patients, educators and medical professionals in an effort to educate them about type 1 diabetics with eating disorders and to promote better treatment options for those who are suffering. If you or someone you know is struggling with diabulimia, please visit www.wearediabetes.org or contact Asha directly at asha.brown@wearediabetes.org

We are always looking for interesting/inspiring diabetes stories. To find out our current call for submissions or to submit your own inspirational story for consideration, check out Real People, Real Stories.

Last Modified Date: June 28, 2013

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