The Foundation for Children with Atypical HUS

Forum Discussions (72)

Featured Discussions

Soliris

Currently an aHUS patient using or considering treatment with Soliris? Please add your voice to this Forum!Several members of this website…

Started by Linda Burke in SolirisLatest Reply

aHUS Business Cards and Flyer

Business CardsAttached is a template for aHUS Calling Cards (Business Cards) that can be used to help guide others to the Atypical HUS webs…

Started by Jodi Kayler in UncategorizedLatest Reply

Current research & presentations: for patients and healthcare providers

Hello all, I'd like to create a place where current research articles can be posted and sorted by topic. If you encounter a published stud…

Started by Joy Lewis O'Brien in UncategorizedLatest Reply

Discussions Replies Latest Activity

Soliris

Currently an aHUS patient using or considering treatment with Soliris? Please add your voice to this Forum!Several members of this website…

Started by Linda Burke in Soliris

282 May 18
Reply by Svetlana Finley

Anti Factor H Antibodies

Hi Everyone,  I'm a new member in the group - my 5 year old son Jeremy was diagnosed with aHUS in September last year.  In January we were…

Started by Michele Haymes in Uncategorized

13 May 9
Reply by Svetlana Finley

Check ups

How frequently should I be seeing my hematologist/oncologist?  Should I be having blood tests done regularly?  I don't have a doctor/specia…

Started by Lannette Yorgason in Soliris

1 May 5
Reply by Svetlana Finley

Current research & presentations: for patients and healthcare providers

Hello all, I'd like to create a place where current research articles can be posted and sorted by topic. If you encounter a published stud…

Started by Joy Lewis O'Brien in Uncategorized

52 Apr 18
Reply by Joy Lewis O'Brien

The Future

Hi everyone!!!   I came across this article and I thought it could spark some discussion and hopefully could be something in the near futur…

Started by Donna Kolp in Uncategorized

3 Apr 16
Reply by sabrina kiernan

UK aHUS Patients

At such a crucial time in the UK with regards to getting funding for eculizumab it is important for patients and their families to do as mu…

Started by Lisa Barker in Soliris

39 Apr 7
Reply by Lisa Barker

Split liver in ahus kid

Hello members .  Now I have created the ahus assosiation in Spain . By the moment only know 7 people and there is 253 ahus cases in Spain .…

Started by maria vicenta carratala rios in Soliris

10 Mar 22
Reply by Len Woodward

aHUS Family History and North Devon

Just as a deviation from the current activity in the UK in getting eculizumab for the treatment of all aHUS  patients who need it, I am sta…

Started by Len Woodward in Uncategorized

0 Mar 13

Prayers

Was thinking that we needed a place to put special requests for prayer for our little ones, ourselves, our outlooks, etc. I know for me pe…

Started by Christy in Uncategorized

63 Mar 12
Reply by Linda Burke

Post Soliris and/or Post Transplant by the numbers

I know most of our "numbers"  are posted in various Forums, primarily under "Soliris",  so one of our goals will be centralizing the number…

Started by Bill Biermann in Soliris

11 Mar 5
Reply by Cheryl Biermann

RSS

WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!

The Foundation for Children with Atypical HUS 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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

  

  
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.



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