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Hi Jackie. Thanks for sharing.
Many forum members are newly diagnosed and just learning what they are up against, but you've been in this battle for more than 2 years and clearly know where you stand. I'm impressed that you can appreciate what you have going for you despite battling two awful diseases.
The world has changed a lot for PNH patients since Alexion introduced Soliris and I'm glad you can continue to take advantage of it. I just wish it was helping you more.
My wife enjoys scrapbooking too, using photos, ticket stubs, and other souvenirs of places we've been. Since you travel I guess you can do the same. But do your medical treatments interfere with your ability to travel?
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