A PNH survivor for more than 25 years, Stephen King speaks about his life as a patient and an advocate in both formal and informal roles -- and offers advice for newly diagnosed PNH patients.

 “I’m an engineer with a problem-solving orientation,” says the medical software manager from Atlanta, Georgia. “After my diagnosis, I thought, now that you know what it is, let’s fix it. It took a little time to sink in that there was no quick fix, and I had to learn more about it.”

Early Diagnosis, Treatment and Emphasis on Self-Advocacy

In February of 2011 I was 22-years-old and attending Orange Coast College. One day I began to notice that I was bruising easily. My legs were covered in bruises by the time I went to my doctor.  The doctor told me I was probably anemic and run down due to my work and school schedule. She ran a regular CBC blood test. 

2015 will mark the 17th anniversary of my victory over myelodysplastic syndrome (MDS).  An unrelated-donor bone marrow transplant saved my life and cured me of the disease in 1998.