I got an email from Dr. Tim Goodship from the University of Newcastle upon Tyne in the UK this morning.
I had sent my blood samples to this lab in 2006 for genetic testing for atypical HUS. They had sent me initial results saying they could not find any mutations of Factor H, Factor I or MCP, the three most commonly implicated genes in aHUS.
Apparently, they did more tests subsequently and a very specialized set of tests revealed that I did have an abnormal form of the Factor H gene called CFH/CFHR1 hybrid. The chance of recurrence of atypical HUS after a transplant with this abnormal gene is 80%.
So, that pretty much rules out me getting a transplant using the current protocols. Even plasmapheresis may not help.
My only hope now is Soliris (Eculizumab) from Alexion Pharmaceuticals. They have just recently completed a set of Phase 2 clinical trials in patients who were resistant to plasma therapy and patients who were on chronic plasma therapy. The clinical trials have met the objectives, they say. I have myself seen scores of papers on the results of the use of this drug and the rate of aHUS remission has been 100%.
Though daily nocturnal hemodialysis has shown outcomes comparable to that of a deceased donor transplant, I still think I want a transplant. The hassle of undergoing dialysis every day and the restrictions on travel (portable machines are not yet available in India) make a transplant seem like complete freedom. So, I really hope Soliris becomes available for use in renal transplants soon. That, as I said, is my only hope.