16 Apr '16, 3pm
Thank you to our Board Members like Stephen King for their hard work:
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 Stephen was diagnosed with severe aplastic anemia in 1985 and with PNH in 1988. “At the time, there was little information about bone marrow failure and few treatments,” he remembers. “There was no Internet. Medical texts had three or four paragraphs mainly calling attention to how poor the prognosis was, but no significant information about the dise...