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PNH Paroxysmal nocturnal hemoglobinuria

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Old Sat Mar 8, 2014, 07:14 PM
ussoccer004 ussoccer004 is offline
Join Date: Feb 2014
Location: Orlando, FL
Posts: 21
PNH Specialist Florida

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?
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Old Sat Mar 8, 2014, 07:23 PM
Kathy S Kathy S is offline
Join Date: Nov 2013
Location: Leesburg, Fl
Posts: 72
Have you checked with Moffit Center in Tampa?
Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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Old Sat Mar 8, 2014, 10:49 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,503
I think Dr. Chieh-Lin Fu is a PNH specialist in Weston, Florida.
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Old Fri Nov 28, 2014, 10:45 PM
Susan Susan is offline
Join Date: Sep 2003
Location: Chicago, Il
Posts: 101

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.
AA/PNH Dx 1998, Warfarin, Soliris
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Old Tue Dec 2, 2014, 10:52 AM
mharrell mharrell is offline
Join Date: Dec 2008
Posts: 11
We're in NE FL. We took our son to see Dr. De Castro at Duke. I liked him.
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Old Tue Dec 2, 2014, 04:14 PM
GoodDay5150 GoodDay5150 is offline
Join Date: Sep 2014
Location: Centennial, CO
Posts: 131
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.
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