The Atypical HUS Foundation

December 2013 Blog Posts (6)

Adults with aHUS - UNITE !

Are you an adult aHUS patient? 

     You are not alone!  There's been a noticeable uptick in the number of adults joining our online aHUS community...and we're happy you're found us.  One of the most frustrating things about any rare disease is the lack of local support groups, and it certainly is wearing to repeatedly answer the inevitable question, "What exactly is atypical HUS, anyway?".   It's a tough balancing act for all who deal with this disease. …


Added by Linda Burke on December 27, 2013 at 4:12pm — No Comments

Merry Christmas......

Hope everyone has a safe and healthy holiday!
Schroeder Family

Added by Jennifer Schroeder on December 24, 2013 at 3:55pm — No Comments


  We celebrated Matt's 23rd birthday yesterday!  15 months after diagnosis, we still are endlessly grateful that he is with us. 

    I am looking forward to the future with so much enthusiasm for what is in store for him and all of us, with Soliris being available. 

   For anyone who has not attended a meet up, I encourage you to consider attending.  Putting a face and a hug to someone who has walked your path is unbelievable.  To reassure the family who is new to this disease…


Added by Barbara Farcher on December 18, 2013 at 10:40am — 4 Comments

Update on Ania

Hi :)

It has been a long while since I was posting here.  Ania had a long time of  peace- her labs were stable and she had normal live.  But she had grown quite a lot during this year and now it seams that her kidneys are not in enough good condition to manage with that bigger body.  We consider Soliris treatment, but we have to get the approval  from national health care center.

Added by Zofia on December 13, 2013 at 3:32pm — 4 Comments

My amazing Skype experience with ahusUK (and why I'm delayed on posting this story)

Hope everyone is well!  I had the most amazing chance to 'speak' to the ahusUK group at their meeting a week ago Saturday.  The cool thing was that my husband and I and the kids were driving up the highway from GA to MD for Thanksgiving and I was able to Skype in from the car with my phone to talk to the large group that was gathered there.  We have so much in common with our 'family' across the pond and I know there are many many of you here on this webpage as members.  I loved the…


Added by Phyllis Ann Talbot on December 4, 2013 at 8:59pm — 3 Comments

Just a few questions......

While Garrett was getting his first dose of platelets he got a severe pain in his back and got sick (throwing up) and every time he received it this pain would return, this was back in October he is still getting a severe pain onset in his back in the same spot then just as fast as it comes it goes I have said something to his doctor but the responce was we can send him to PT I don't think this is a pulled muscle as he had never had this before. His blood work is all normal (yay) but now he is… Continue

Added by Jennifer Schroeder on December 2, 2013 at 9:50pm — 2 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.


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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