The Atypical HUS Foundation

Forum Discussions (138)

Discussions Replies Latest Activity


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


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


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


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

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 in Soliris

2 Sep 23, 2015
Reply by Len Woodward



To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to

Membership is open to patients, family, friends, caregivers research and medical personnel.


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.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.

Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.


NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.


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.
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact with your request and details.


 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at

Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012

For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email



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