I am sorry to hear that you have PNH. I was dgnsd abt 3.5 yrs ago and had a succ MUD trans 3 yrs ago. I had many of the symptoms off and on for prob 8-10 yrs. I was pres blood thinners up to my trans date, and as far as I know I never had any clots. In my opinion, I would seek out a specialist who can poss assist you in getting Soliris, and or another drug for your disease. With that, I wld also advise you to inq abt a stem cell transplant in either your country or elsewhere. There are med centers/ drug companies that are seeking ppl such as yourself for research and treatments, so I wld also look into that. There is a lot of info abt PNH on the WWW, and plenty of helpful resources. That wld be my focus, not clone size, when do I die from this, etc. Good luck in your treatment.
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