Beginning Soliris
My name is Lee.
I was recently diagnosed with PNH, and am in the process of educating myself and looking for others to interact with and learn from.
As it is such a rare disease, I am very pleasantly surprised to see any groups at all online, although I should not be:-)
I will begin Solaris as soon as I can be vaccinated for meningitis, but I am not at all sure what the best course of treatment is. Fortunately, my hemo is not sure either!
There is so much conflicting information, even among medical professionals....it IS cancer, it is NOT cancer, for instance. Does it matter? LOL, mortality rates don't look too good however it is defined.
I look forward to meeting everyone here,
talk soon,
Lee
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