When faced the diagnosis of a rare disease, one of the first things that needs to be done is finding a doctor who can treat it. That’s a lie. The first thing you do is pick your jaw up off the floor, and start breathing again, THEN you try to find a doctor.
My GP had a recommendation for me for a specialist, which was a good thing, because I had absolutely no idea where to go. Unfortunately this doctor had never seen an MPN patient, and had never even heard of an MPN patient my age. At the same time that I was diagnosed, my mother was also undergoing cancer treatment, and she asked her doctor if they had any recommendations. Her doc suggested I see someone at the same facility. The doctor I went to see (my current doc) does not specialize in MPNs, however he sees many of them in his practice. Sometimes you need another opinion, and you may not know where to start. I would suggest visiting http://www.mpnresearchfoundation.org/Find-Treatment-Facility to look for a treatment facility, and doctor near you!
Tomorrow we’ll be talking about the dreaded “You don’t LOOK sick…” subject…