The Atypical HUS Foundation

June 2013 Blog Posts (6)

How are your numbers on Soliris?

I've noticed that my numbers still go up and down while I have been on Soliris. I have been getting treatments with it since February 2013 till the present time. The one that I notice the most is the platelets. For example, two weeks ago my platelets were 164 and this week they are 136. I know this isn't horrible (especially after seeing them way lower than this a year ago), but it makes me wonder if or when Soliris will start kicking in. Anyone having the same situation? Please comment…


Added by Lisa Stockdale on June 26, 2013 at 2:04pm — 3 Comments

Thursday is the big day

Well it's hard to believe that little miss Chloe has been doing treatment every other week since November..Chloe is having her kidney biopsy on Thursday at 845 am we are ready for some long awaited answers.. Is the medicine working? Will we continue to use the medication? And how is her AHUS doing? Well I will tell u how I think she is doing... She looks amazing and is off many of her meds her labs have been good this past month but most of all she is happy :) as far as moving goes we might not… Continue

Added by lisa ann peterson on June 25, 2013 at 7:25pm — 1 Comment

Therapy, a way to continue the healing after aHUS

As many of you know, Nathan had wonderful results with his kidney/soliris transplant.  What you might not have known was his schooling was suffering a bit and he had some motor skill issues and endurance/strength problems.  He has been working with physical therapists, speech therapist and occupatiinal therapists for the last six months to address lingering problems.

Physical therapy went extremely well, especially after they diagnosed a curvature at his ankles and he was fitted with…


Added by Cheryl Biermann on June 24, 2013 at 1:38pm — 4 Comments

My aHUS Story

I am 28 years old and have been recently diagnosed with aHUS. Back in March 7, 2013, I went into the hospital with what I thought was a ruptured gall baller. I had been sick for almost a week with flu symptoms. I went to my local doctor because I thought he could give me some Tamaflu before I went on a small vacation with my husband to Columbus, Ohio. My doctor took one look at me and decided that I had to go to the hospital and referred me to a doctor at Flower Hospital in Sylvania, Ohio.…


Added by Lisa Stockdale on June 24, 2013 at 12:07pm — 13 Comments

Soliris Clinical Trial Data - NEJM Article 6/6/13

     On September 23, 2011, the U.S. Food and Drug Administration (FDA) granted accelerated approval for the use of eculizumab (Soliris®, product of Alexion Pharmaceuticals, Inc.) for the treatment of pediatric and adult patients with atypical hemolytic uremic syndrome (aHUS).  Two phase 2 trials were conducted  and researchers found that long-term treatment with eculizumab (Soliris®) was highly effective in ‘thwarting thrombotic…


Added by Linda Burke on June 7, 2013 at 12:21am — No Comments

New Drug in the Pipeline- Clinical Trial for OMS721

     On May 28, 2013 Omeros Corporation announced its filing of a Clinical Trial Application (CTA) with European regulators to initiate clinical trials evaluating OMS721, the company's lead human monoclonal antibody.  This follows their April 2013 application for OMS721 to receive Orphan Drug Designation with the US Food and Drug Administration (FDA).

     The lead indication for OMS721 will be atypical hemolytic uremic syndrome or aHUS. Assuming positive regulatory review of its CTA,…


Added by Linda Burke on June 1, 2013 at 11:00pm — 5 Comments

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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.


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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.
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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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