The Atypical HUS Foundation

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.

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Just checking through forums and came across this. Best research I know about is Avinda Bagga in India, lots of experience there. for starters See also Linda's blog about Innsbruck

Wow very interesting. Sorry, no help here.
My son who is 7 just got the same diagnosis and his Dr is starting him on Cellcept. He said it was to try to suppress his immune system. He is also currently on Soliris which he started three weeks ago to help immediately because the Cellcept might take a while to work. I will let you know if we have any luck with the Cellcept. They will be testing his antibody levels again in a month.

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  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. 

Len- this is fantastic! I just read an article last night about this. I will look at your page. If I get his genome sequencing done here could they add it to the study? Or i would fly over there and have him tested if they included him! He began cell Cept and prednisone a couple weeks after he started Soliris and has been on all since. Drs think the cell Cept is what dropped his titers - but not sure. I would love to stay in the loop on this uk research- so exciting!

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Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
• • • • • • • • • • • •
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
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