2015 Baltimore Patient and Family Conference
Patient, Educator, and Volunteer
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
Aplastic Anemia Patient “Just Focused on Beating It”
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.
Long-term survivor and dedicated volunteer
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.