Ethan's genetic testing was clarified in Iowa that he has the FH auto antibodies instead of the FH mutation we thought he had. Dr. Nester talked briefly about how this specific type could be controlled by immune suppressants and not necessarily soliris. What are your thoughts on this? Does anyone have this specific type and have you had this discussion? Is there research that I can read upon it. I know that Europe has different titer levels that are considered safe than the US. I love Soliris and it's my baby blanket I won't give up but I am very interested in this and what possibilities the future may hold. I appreciate your thoughts and advice- thanks in advance.
Just checking through forums and came across this. Best research I know about is Avinda Bagga in India, lots of experience there. http://www.ncbi.nlm.nih.gov/pubmed/25362019 for starters See also Linda's blog about Innsbruck
This is a topic of interest just now and clinicians and researchers seem to be looking at it with some focus following KDIGO. This blog on aHUSUK website contains some of the issues it is raising http://ahusuk.org/ahus-resulting-from-anti-factor-h-antibodies-more.... In the UK aHUS patients affected by AFHA are to enter a study for whole genome sequencing to see what other genetic factors may affect the mechanism for the antibodies creation in those circumstances.