The Atypical HUS Foundation

My sister has been on Soliris for several months and has shone marked improvement. A month ago she suffered a seizure that resulted in a hospital stay for more than a month and because of the hospital limitations the drug could not be administered. Her improvement from the seizure has been very successful (with intense rehab and therapy) and her cognitive awareness and general demeanor has markedly improved. Now the family (including my sister) is wondering should she restart Soliris and possibly lose her positive awareness  or discontinue the drug? What risk is involved stopping?  Her medical stats are currently all good.

I've advised the family (I live on the opposite coast) to sit down with her doctors to hear the range of possibilities and options, but I was wondering if anyone out there had a similar decision to make?

Thanks in advance. Rebecca

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Good advice already to talk to doctors . there is someone in Minesota who had a stroke ( not seizure )and is on eculizumab still. I am not a doctor but I have heard complement plays a part in repurfusion injury which follows a stroke, like it does a donor kidney for transplant . I believe eculizumab has been used with some effect on repurfusion injury , It is very important all options are advised by the doctors though.

Thanks for the quick response. Tough decisions but appointment has been made with the doctor before deciding anything.

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The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

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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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