Rosai-Dorfman Disease
Hi fellow rarities!
I was just diagnosed with this super rare disease. I live in Ohio and thankfully found a specialist @ Cleveland Clinic. It has been a troublesome year due to this disease and I'm missing my right colon because of it. Of course, I have the extra-nodal type. So, what is it?
It is a proliferation of a type of white blood cells, called histiocytes, that abnormally cluster together, causing the large histiocytes to engulf lymphocytes, leaving the lymphocytes fully intact (so not a macrophage). Supposedly painless and benign. Not so in my case.
I've been in pain for a year, constant diarrhea, a hemicolectomy (from the masses abutting my colon, causing necrosis), a slew of doctors wondering why I have masses on my scans, a lot of explaining, and unable to work consistently as I'm an RN and can't adequately do my job with this pain and frequent bathroom trips. My most recent scan shows a new mass that is rapidly growing behind stomach (from January to May, it is now the size of a lime).
Treatment: Mekinist 1mg. Not started yet, since it is a specialty drug being shipped to me. Cautiously optimistic that this will shrink the mass and I won't lose any more body parts!
#Stay hopeful