PNH Specialist Florida

[ussoccer004]

Does anyone know if there is a PNH specialist in Florida at all? I know we have M.D. Anderson Cancer Center that is now the University of Central Florida Cancer Center.

I began my Soliris last week and starting to feel amazing, less headaches, shortness of breath getting better. All symptoms of PNH are starting to slowly subside. I have a large clone size and had a blood clot in my head recently which scared my hematologist in starting Soliris ASAP. To my amazement she seems to think that one day I will be able to come off soliris and this is what scares me because I thought this was a life long disease lol?

[Kathy S]

Have you checked with Moffit Center in Tampa?

[Neil Cuadra]

I think Dr. Chieh-Lin Fu is a PNH specialist in Weston, Florida.

[Susan]

Keep in mind there are only 7 or 8 true PNH experts here in the states. These specialists will have seen over 100 PNH patients, (many of them have seem 300+ patients), be both PNH researchers and clinicians and be up to date on the latest research. This usually means being a member of the International PNH Interest Group. PNH is so rare you want to see someone who has as much experience as possible.

The closest one to Florida is Dr Carlos De Castro at Duke. He took over Wendell Rosse's PNH clinic. He is ok. Dr Monica Bessler at Univ of Penn is excellent. On the east coast there is also Dr David Araten at New York University. He is a sweetheart and is quite popular. I see both Araten and Bessler, Bessler more often just because I'm not that fond of NYC.

[mharrell]

We're in NE FL. We took our son to see Dr. De Castro at Duke. I liked him.

[GoodDay5150]

I had a STC for PNH in 2011. I was referred to a specialist by my HMO that I had at the time. I, like most ppl had never heard of PNH until my diagnosis. You can probably check the NORD website and maybe Alexion for specialist info. I have also been told that many experts are going to be affiliated w/ med school med centers, but my clinic is not; their prim. focus are cancers of the blood. Good luck in your treatment.