News & Events

A letter to Dr. Collins, NIH Director, from Marcia R.

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 autoimmune disease because of extreme elevated CRP and sed rate. 

That's when my nightmare began! After seeing many specialists, too many to list, my legs began to swell bilaterally and after years of tests and treatments, I am not able to walk and am disfigured. I literally have not met a single physician who knew much about lymphatics, neither at the University of Iowa nor at Minnesota. So I am now living in assisted living and can no longer drive or walk!

As a retired nurse who spent years caring for others, I feel like my life is over. I live in chronic pain and severe depression. 

I have had doctors call me fat and been insulted and mistreated at times. 

Why do I know more about lymphatic disease than them? Because I have studied and dug for answers even tried to educate them. 

So it is with utter despair I write this because I feel betrayed and disappointed in their lack of knowledge and their refusal to learn more. I know I speak for many who suffer in silence and many who will suffer if there isn't a change in medical education. Please listen to our voices asking for change and recognition.

Thank you for reading this letter. I hope it will help in making changes in diagnosis and treatment of lymphatic disease. Our lives depend on it.

Marcia R.