The Atypical HUS Foundation

Soliris (65)

Discussions Replies Latest Activity

aHUS After Child Birth

Hello! I'm very newly diagnosed with aHUS & feel like I'm in a tail spin. I'm 38, very healthy & active, just gave birth to twins,…

Started by Becca

5 Jan 17, 2015
Reply by Maria

Need some assistance from others

I am dealing with an insurance company that has denied access to a Critical Care claim because Will, our son with aHUS, is no longer needin…

Started by Kerry Waters

2 Jan 11, 2015
Reply by Kerry Waters

PTSD / Anxiety EMDR

In Iowa, a few parents shared that their children were struggling with PTSD and/or anxiety, so I thought I would share this with you. Our 1…

Started by Diane schaller

0 Nov 4, 2014

aHUS Regional Meetings

Since we are "new" to aHUS, we didn't have a clue where to begin when our son was diagnosed. From the beginning, my best friend said "Let's…

Started by Kerry Waters

1 Jul 23, 2014
Reply by Cheryl Biermann

Complement Factor I

Hi everyone!  I got my genetic testing back and I have an abnormal CFI gene.  The doctors recommend a liver/kidney combo transplant.  I am…

Started by Kristen Bruner

6 Jun 3, 2014
Reply by Kristen Bruner

Got Genetic Testing Back

But even more confused. Annnd of course his doctor is out of town. It says that he carries a novel variant of unknown significance in the g…

Started by Jennifer Schroeder

4 May 30, 2014
Reply by Cheryl Biermann

Fetal Protein Level

Fetal Protein Level is a measurement in the blood of a pregnant woman which can show abnormalities in the fetus.  Our son's wife showed a r…

Started by Rebecca Beusse holman

2 May 25, 2014
Reply by Rebecca Beusse holman

Blood Pressure

This last week Fatheads BP has been crazy high then crazy low getting lots of headaches and light headed ECT... i find myself having him ch…

Started by Jennifer Schroeder

2 Apr 26, 2014
Reply by Svetlana Finley

Got part of genetic testing back

The part we got back were negative I believe it was the antibody testing. We have been having issues with the school so we are having a 504…

Started by Jennifer Schroeder

4 Mar 31, 2014
Reply by Cheryl Biermann

Bone pain

Any patient experience severe leg bone pain? Ethan's right leg has been hurting for a few weeks now- chalked up to growing pains by his nep…

Started by Anne Bruns

7 Mar 26, 2014
Reply by Jennifer Christopher




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