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Old Mon Nov 19, 2007, 11:33 PM
marc marc is offline
Join Date: Apr 2006
Location: Aurora, IL
Posts: 11
Hi Lee,
I'm sorry to hear you also have PNH.

I have had PNH and Aplastic Anemia for two years now. I average blood/platelet transfusions every two weeks and am also taking Soliris.

I have been on Soliris for many months now and it has been very helpful. I would recommend getting a port inplanted if you don't have one as it makes it easier to get both Soliris and transfusions.

I also would recommend seeking out a PNH specialist in conjunction with your hemo doc. They can give you a great deal of information regarding PNH that a hemo can't if they aren't familiar with the disease. Depending on where you live and insurance there are several around the country. Dr. Araten in NYC & Dr. Maciejewski at the Cleveland Clinic are two I've seen. I know there are some on the west coast, at the NIH in Maryland and I believe Florida. I am sure there are others spreadout throughout the country, but not that many.

Don't believe the data on mortality rates, especially with Soliris now available. A lot of the data on the web is old. I have met people who have had PNH for over 25 years.

Not to say anything negative about this website as it is full of great information, but you may want to check out
This site is THE major PNH support group website with hundreds of users, tons of info, links to many subjects, discussion and posting sections similar to this site. The people who are the main movers and shakers on the support site also are heavily involved with the PNH Foundation, a non-profit org that offers financial assistance to PNHer's.

Again, I don't wish to downplay this site at all, I have used and viewed it many times, but it may be worth your while to check out the other one as well. You will need to register on it like this one.

I wish you luck as you start Soliris and please feel free to post any questions you may have. If I can help answer any, I will be happy to.

Marc, Severe AA and PNH; diagnosed April 2006; Treated with ATG, currently taking Soliris
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