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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IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

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 info@atypicalhus.org

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

WELCOME - JOIN US!

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.


NEW 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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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 info@atypicalhus.org 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 www.atypicalhus.org.


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 info@atypicalhus.org

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