PNH Disease – A Very Rare Blood Disorder

Devastating Blood Disorder with Diverse Symptoms

PNH is a deadly life-threatening disease with devastating consequences. 35% of patients die within 5 years of diagnosis despite best supportive care. You might not have heard of PNH–it’s a rare blood disorder that affects a few patients per million. But its rarity doesn’t make it any less significant. Join one Dr. Eloy Roman, one of the country’s only experts on this disease, and a patient advocate as we go behind the mystery of PNH.


The Balancing Act




  • Weaver Union

    Today was the first time watching the episode and by luck this was a topic. I am overly excited for the information. My daughter who is 23 was diagnosed with Lymphoma only 9 months ago and a blood clot in her leg (which no one knows why or how it has developed). It took them 3 months and 9 different Dr’s to finally diagnose her with the Lymphoma but still no confirmation of the blood clot in her leg .She has done chemotherapy for 6 months and we are awaiting results for further diagnoses of the Lymphoma. But I want to say thank you for broadcasting this information because now I have a request for the Dr’s to perform.

  • Benita Marcus

    The Aplastic Anemia and MDS International Foundation has many resources to help patients and families dealing with PNH and related bone marrow failure diseases. Our patient education staff can help by providing referrals, education programs on our Online Academy (www.aamds.org/learn) and can also connect you with other patients and families. You have the option of connecting on a one-to-one basis or with a group. You choose the way you prefer to interact – by phone, in person or online. Please reach out to us by phone (800) 747-2820 or by email to help@aamds.org. Visit our website http://www.aamds.org. You are not alone!