The Atypical HUS Foundation

Forum Discussions (138)

Discussions Replies Latest Activity

aHUS and eculizumab

  http://sidharthsethi.blogspot.com/2016/04/eculizumab-for-ahus-first-use-in-india.html This article was written about our son, Jacob. We…

Started by Samantha Blaszynski in Soliris

6 Apr 11, 2016
Reply by Len Woodward

Seizures

I've seen a few people mention seizures as part of Atypical HUS. We are watching Nathan closely since he has had seizures due to fevers and…

Started by Cheryl Biermann in Uncategorized

13 Apr 6, 2016
Reply by Cheryl Biermann

EMPOWERING THE USA REGIONS

It is a hard job to run a patient organisation. There are so many things that a patient organisation has  to do. In a long forgotten forum…

Started by Len Woodward in Soliris

0 Mar 4, 2016

aHUS websites

As someone who for four years has had the task of introducing and maintaining a website on behalf of the UK's aHUS patient organisation I c…

Started by Len Woodward in Uncategorized

0 Dec 26, 2015

aHUS websites

As someone who for four years has had the task of introducing and maintaining a website on behalf of the UK's aHUS patient organisation I c…

Started by Len Woodward in Uncategorized

0 Dec 26, 2015

FH auto antibodies

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 t…

Started by Anne Bruns in Soliris

5 Dec 6, 2015
Reply by Anne Bruns

Cellcept

Has anyone used Cellcept in conjunction with Soliris? My sons nephrologist wants to put him on Cellcept in hopes of lowering his factor H a…

Started by Stephanie Boulay in Soliris

0 Nov 15, 2015

We are new here.. 5 years old Josef diagnosed with aHUS recently.. May I ask you parents a few questions?

Hello everyone.. my older son Josef / 5 yrs old was recently diagnosed with aHUS .. Doctors said he did well so far, did not require dialys…

Started by Jana Kacerova in Uncategorized

0 Nov 13, 2015

THC

Has anyone tried this for pain? Thank you.

Started by Marilyn Cline in Soliris

0 Nov 9, 2015

aHUS patients that have received a negative genetic test but have had a further episode.

Hi, I recently had a severe episode of aHUS and nearly lost my life - the genetic tests came back negative but only for what they know they…

Started by Debbie Montagnon in Uncategorized

0 Oct 14, 2015

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