PNH: Wilmington woman battles rare disease

Reported by Claire Hosmann - bio|email
Posted by Debra Worley - email

WILMINGTON, NC (WECT) - A Wilmington woman with an extremely rare, life-threatening disease is depending on her brother to save her life.

28-year-old Amanda Cooper went in for testing when she was physically exhausted all the time.

At first, doctors told her they thought she had cancer, but Dr. Kenneth Fink of New Hanover Regional Medical Center did further testing and discovered she had Paroxysmal Nocturnal Hemoglobinuria (PNH).

Dr. Fink says PNH is similar to leukemia in that it is a disease of the bone marrow, where cells "just aren't right."  The disease is not genetic and cannot be passed to Cooper's children.

"It's extremely rare," said Dr. Fink.  "I've only seen a case of it twice in my whole career - I've been doing this twenty years."

Cooper and Dr. Fink are working together to beat PNH.  She will go to Chapel Hill in a few days to receive a bone marrow transplant from her brother, which she says is her last hope.

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