Dear Dr. Collins and Dr. Madera,

I am a Public Health nurse as well as an Episcopal priest. I write to you today as a chronic lymphedema/lipedema patient. I also write on behalf of my late brother. We both were born with lymphedema/lipedema. My brother died in 2020 from non-COVID-19 multi-organ failure of which his lymphedema was a factor.

We both endured a childhood of abuse as we were considered fatties and ridiculed at school and in our neighborhood enduring jibes, jokes, and rhymes about fatties. When I was in third grade, I was the “Fat Lady” in the school play and dressed in a pink tutu. Everyone laughed at me. My parents were humiliated  My brother suffered from mental illness his whole life, no doubt exacerbated, if not caused, by his enormous size. He suffered and died from infected ulcers on his feet and legs that resisted treatment in no small part due to the huge amount of lymph fluid in his lower limbs.

We are not alone. Millions of children, young adults, and adults have suffered in similar fashion.

I am grateful for the growing awareness and action by the healthcare community to both recognize and address the treatment and eventual cure for these pernicious, deadly diseases/disorders.

I look forward to the American Medical Association’s recognition of the legitimacy of these diseases and am encouraged by the growth of research and treatment by the NIH. I look forward to seeing more of both.

Sincerely,
The Rev. Judith Taw Beck, BSN, MDiv.
Philadelphia, PA