Personal Stories, Advice, and Support
I was diagnosed with PNH in 1996 .I have been on steroids every day since then .Now on a new drug SOLIRIS at a cost of 20,000.00 a month. They call it an orphan Drug.
How did I get PNH?
I bruise easily since being on the medicationsand I get skin conditions and boilsthat is a sign of blood problemsI have had tests for a number of things but they never show a thing.