The Atypical HUS Foundation

Forum Discussions (138)

Featured Discussions

Soliris

Currently an aHUS patient using or considering treatment with Soliris? Please add your voice to this Forum! Many members of this website ha…

Started by Linda Burke in SolirisLatest Reply

aHUS Complications: Potential Impact for Multiple Organs

 Atypical HUS - It's Not Just About Kidneys       The topic of aHUS complications has surfaced in multiple commentary, including aHUS co…

Started by Linda Burke in UncategorizedLatest Reply

RESEARCH Forum

Hello all, I'd like to create a place where current research articles can be posted and sorted by topic. If you encounter a published stud…

Started by Joy Lewis O'Brien in UncategorizedLatest Reply

Discussions Replies Latest Activity

What are the aHUS triggers? Is there any recent research identifying them?

We so far know that aHUS has some genetic mutations and complement issues associated with it. However I think we are missing a big piece of…

Started by Colette Ann Frysz in Uncategorized

14 Oct 24
Reply by Len Woodward

Cellcept to Eliminate Factor H...

My two year old daughter was diagnosed in May with aHUS. She responded beautifully to Soliris and continues to do well. Her doctor has sugg…

Started by Erin Schooley in Soliris

2 Jul 14
Reply by Erin Schooley

ADULTS with aHUS

 Over the past couple of years, new information about atypical HUS has been slowly filtering from the research and clinical arenas into jou…

Started by Linda Burke in Uncategorized

191 May 15
Reply by Donnan Oyler

LINDA BURKE ENGAGES THE aHUS PATIENT WORLD

One day several years ago, Linda Burke learned about a disease called aHUS. Her son was ill and that was the diagnosis she was told. Her re…

Started by Len Woodward in Soliris

0 Nov 9, 2016

Atypical HUS and illness

Hi  I wonder if anyone can help me. My 5 year old daughter has been diagnosed with atypical hus inJanuary. It was a disease that we know no…

Started by Becki Cheadle in Soliris

1 Oct 14, 2016
Reply by Linda Burke

Soliris and excruciating leg pain

Hello everyone , this is my first time posting and I'm looking for some answers, suggestions or maybe just comfort. I want to start off by…

Started by Cristian Arias in Soliris

0 Sep 27, 2016

Low Hemoglobin

My husband is on Soliris since May of 2016.  His kidney function has improved enough to get off dialysis, however he has noticed he has slo…

Started by Betsy Pennington in Soliris

4 Sep 5, 2016
Reply by Betsy Pennington

aHUS Family History and North Devon

Just as a deviation from the current activity in the UK in getting eculizumab for the treatment of all aHUS  patients who need it, I am sta…

Started by Len Woodward in Uncategorized

7 Aug 28, 2016
Reply by Len Woodward

To test or not to test?

Hi! I was diagnosed with AHUS in October. My genetic testing showed that I have a mutation in the CD46 gene, autosomal dominant. I have 4 c…

Started by Tricia in Uncategorized

2 Apr 28, 2016
Reply by Debbie Griggs

Soliris: Stop or Continue?

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 ho…

Started by Rebecca Redshaw in Soliris

2 Apr 11, 2016
Reply by Rebecca Redshaw

RSS

Badge

Loading…

© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service