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
Dear Dr. Madara and Dr. Collins:
I first encountered the disease of lower-limb lymphedema in my father, who complained of “this damn leg” as it swelled to twice its normal size from prostate cancer treatments. He was a professor of surgery at Yale. He died of his cancer before I was
Read More >Dear Drs. Collins and Madara:
I write to lend my voice in support of those thousands of men, women and children, including myself, suffering from lymphedema.
My story is simple. I had a wide axillary excision for breast cancer in Sept. 2014. I was proactive about the risk of lymphedema
Read More >Dr. Francis Collins and Dr. James Madara,
Before I wrote this letter I wrote my suicide note. I now know it’s not a matter of if, it’s a matter of when. I am 33. A single mum. I do not want to die but I cannot continue my ‘life’ like this. I am no longer living, merely existing. I am unable
Read More >Dear Dr. Madara,
In August of 2008, I had symptoms of possible uterine cancer. It was so early in the development of my disease that I was given a choice: wait a few months and test again or have a hysterectomy now. As I was beyond childbearing age and wanting to err on the side of caution,
Dear Dr. Collins:
It was with great pleasure that I read that the NIH has been directed to establish a National Commission on Lymphatic Diseases. This is long, long over-due. Those of us who suffer from lymphedema have felt so greatly ignored by the research community.
One year after cancer
Read More >July 15, 2021
Dr. Francis Collins, Director, National Institutes of Health
Dr. James Madara, CEO and Executive Vice President, American Medical Association
Dear Drs. Collins and Madara:
I write to lend my voice in support of those thousands of men, women, and children, including myself,
Read More >December 16, 2020
Dear Dr. Madara,
I want to include you, as the CEO and Executive VP of the American Medical Association, in a troubling, yet all too common, representation of the inadequate lymphedema treatment received by a patient diagnosed following cancer surgery. The patient... me. Read More >
Dr. Madera, my name is Leslie Brady. I'm a 55-year-old male with a rare Lymphedema diagnosis. I was diagnosed with Lymphedema in both legs, which is rare enough, but even rarer for men. I was diagnosed in 2015, and since I have spent thousands of dollars on stocking, glue, and treatments.
I
Read More >Subject: Please Support Lymphedema Patients
I facilitate a Lymphedema Support Group and nearly every new patient contact for years has begun with the same sad story of how they have been undiagnosed, underdiagnosed or misdiagnosed. They have been treated with disrespect and dismissed without
Read More >