Hi Dave,

I am so glad Soliris is working for you. I believe it is a very good drug.  It did stop my brothers immune system from attacking his blood cells, but he got the drug too late.  He had another rare illnes, A Typical Hemolytic Uremic Syndrome. It took a long time and two hospitals to finally come up with a treatment plan. By the time they started the infusions he had blood clots in his kidneys and lungs and eventually his heart.
Having the right care can mean life or death when you are dealing with a snowflake disease.  Also it is impossible to get your insurance to cover a drug, let alone a very expensive drug, unless you get the exact diagnosis the FDA   has approved the drug for.  Meanwhile you wait and hope you can hang on long enough until you can get approved.