The Atypical HUS Foundation

Soliris (65)

Discussions Replies Latest Activity

THC

Has anyone tried this for pain? Thank you.

Started by Marilyn Cline

0 Nov 9, 2015

aHUS triggered by pregnancy

My pregnancy triggered aHUS shortly after I had my son. I had months of plasma exchanges and I'm still continuing dialysis. My body respond…

Started by Katie Castle

2 Sep 23, 2015
Reply by Len Woodward

Trip to Florida

Taking Cole (7 yr old aHUS patient) to Destin, Florida.  Got information from Alexion regarding resources in the area.  Doctor has not resp…

Started by Linda Montes

2 Jul 13, 2015
Reply by Barbara Farcher

Stopping Soliris

Hello All, I am a new member. My friend was diagnosed with aHUS postpartum. She recovered completely once she was started on Soliris. She…

Started by Uma

10 Jul 6, 2015
Reply by Len Woodward

Diagnosed with aHUS 6 months ago

Hello there I was recently diagnosed with aHUS when hospitalized 6 months ago Not knowing what was happening on Oct 6th 2014 I went to the…

Started by Donna

6 Jun 15, 2015
Reply by Cheryl Biermann

Woman with aHUS

Well......here we are down a journey we never expected to be going down, but these are the cards we have been dealt. So, you ask yourself n…

Started by Crystal Gimenez

3 Jun 15, 2015
Reply by Cheryl Biermann

MCP/CD46

Hi there! I'm new to the site....anyways last Christmas my 18 year-old sister was diagnosed with Atypical HUS. We just recently got her gen…

Started by Lacey Wallace

0 May 13, 2015

Infusion complications after 14 months?

Hello, My son, Evan, was diagnosed in November of 2013, right after turning 10.  Luckily, his doctor at Akron Children's Hospital zeroed ri…

Started by Sharon Wooldredge

4 Apr 21, 2015
Reply by Anne Bruns

Just on my mind

We are all on this roller coaster ride of Ahus together. Not so long ago we suffered alone. I'm sad that the number of us are growing but w…

Started by Jill Ziegler

2 Apr 21, 2015
Reply by Anne Bruns

My journey with Ahus

I'm a 36 year old woman, mother of two wonderful kids (14 & 15) and military wife. I'm 7.5 years post op from a liver transplant. When…

Started by Aimee Elizabeth LaVoie-Vasser

1 Apr 15, 2015
Reply by Paula Blanchard Lamigo

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