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. Collins,

My son is 45. A father, husband, and an important part of the art and humanities world in Chicago.

He developed lymphedema possibly from a fall that infected his leg about ten years ago. He carried on his healthy life until 2 years ago when one leg began to swell and then

Dear Dr. Collins:

This is my story of so-called lymphatic disease. It reads the same as many but I am hoping that my letter will add to the impact of a system that has failed so many, including me. 

After being seen in the ER 11 years ago for chest pain. I was told I probably had an

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

Dear Dr. Collins, 

Thank you for taking the time to read my LE story.

In 1997, my dermatologist found a suspicious mole on the back of my left calf. The mole was surgically removed and the pathology report came back as “inconclusive” for
melanoma.

Subsequently, I was scheduled for surgery

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

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

Hello Dr. Francis Collins (NIH),

I am a lymphatics researcher, conducting several clinical studies of cancer-associated lymphedema and reparative microsurgeries. My physician co-PIs are keenly aware of lymphatic dysfunction arising during and after cancer treatment, but sadly, many cancer

Dr. Colins and Dr. Madara:

I am writing in regards to the hope that the NIH will establish a National Commission on Lymphatic Diseases as proposed in a FY2022 appropriations bill. I am sharing my story as well because I have lymphedema.

After numerous visits to the doctor to pinpoint the

In July 2021, the U.S. House of Representatives voted on the FY2022 appropriations bill. There was a dramatic edit to the bill, supported by Committee Chair Rep. Rosa DeLauro and Committee Member Rep. Tom Cole. Rather than “encouraging” the National Institutes of Health (NIH) to establish a