[DanL]

David, I'm sorry to hear about you and your brothers diagnoses. I'll address the last question as it is easiest. The diseases are not hereditary. While it is a little unusual to develop maa later in life, it is not unheard of, and it sounds like you have had symptoms for 20 years, which would make the onset a very mild aa that progressed from what it sounds like. As for your brother, if he is around 60 years old, he is the poster boy for PMF. That disease tends to hit in the 6th and 7th decade of life and is pretty rare before that. In terms of rare disease. I understand the frustration and difficulty around it. My diagnosis of MDS at age 36 is extremely rare without prior chemotherapy. I calculated under 100 people in my age range in the US in the year I was diagnosed. My initial diagnosis of ITP was in error, because it was basically incomprehensible to the doctor that somebody my age could have it. MAA and PMF are both pretty manageable these days and we have some good treatments available to improve blood counts and improve quality of life. There is nothing easy or fun about having these diseases, but you and your brother have options and can both generally live a long time with the diseases if treated and get a good response. Rare blood diseases suck. I wish you and your brother well. Make sure you find centers of excellence for your treatment protocols. And get 2nd opinions until you are comfortable with treatment options and goals. Also, if you or your brother need help with drug costs, co-pays, etc, go to lls.org and apply for financial assistance. Do the same with your treating hospitals. Lastly, the forums aren't very busy these days, but there are still a lot of Cheyenne and former patients here to help answer questions as they arise. Use the resources, ask questions.