One Brave Doctor’s Personal Battle with Mycosis Fungoides

Dr. Paul Raffer was a neurologist who practiced medicine until he got sick with mycosis fungoides.

His symptoms began on his skin, and after consulting with a colleague, he was immediately referred to a specialist at Stanford University in Palo Alto, California.

The diagnosis was worse than Dr. Raffer anticipated. He had stage IV mycosis fungoides and Sezary syndrome, a leukemic involvement of the skin. Sezary refers to the number of malignant cells in a person’s blood.

To have a stem cell transplant, which was Raffer’s only hope of survival, his Sezary count had to be under 2,000—his was way above that level.

Raffer had to undergo chemo and radiation therapy, which didn’t go very well. His oncologist told him they would fight together. Months later, he was able to undergo the stem cell transplant that ultimately proved successful.

Check out the YouTube video below of Dr. Raffer telling his story and inspiring people to hold onto hope.

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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