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Hi KJAY,
Those numbers are low. Have you gone to the PNH support group yet ? My husband has PNH and we found that site. I learned more about PNH in 1 week from everyone on there ,than I did in 20 years.It is a great PNH website join in and see for yourself you will learn more from that site than any doctor has ever told you and since you were just diagnosed that is great that you can learn a lot right from the start. Best of luck to you. It's PNH disease .org You will not be sorry you checked it out. Hope to see you on there just read and jump in anytime. Check it out Your doctor if a hematologist I'm sure he or she is should have some kind of papers for you that is where I got the site from my husbands doctors gave us some booklets about PNH and it had these different sites. Nancy
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Husband has had PNH since 1990
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