25 Jun '15, 3pm

So great! "How fortunate & blessed I feel, that I can say half my life I have survived my PNH diagnosis"

This year marks the 25th year I have survived paroxysmal nocturnal hemoglobinuria . (PNH ) How fortunate and blessed I feel, that I can say half my life I have survived my PNH diagnosis. Taking a look back at how my journey started -- just having completed college and newly married -- the first thing I did after being diagnosed was to seek out the support of other patients. I found help through the National Organization for Rare Disorders (NORD) who mailed me a list of about ten patients and utilizing postal mail, reached out to everyone on the list. It was obviously a really slow process by today’s standards and not many responses were received. Some years later, I found a small group of about five PNH patients on a Yahoo group chat site. I was truly inspired by a woman, Rebecca Gaskin, who started the chat group. Although she suffered severe abdominal pain every day, she...

Full article: http://www.aamds.org/patient-chronicles/melanie-marquez-0

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