The Foundation for Children with Atypical HUS

Forum Discussions (41)

Featured Discussions
Jodi Kayler

aHUS Business Cards and Handout

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

Joy Lewis

Current research

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 in UncategorizedLatest Reply

Discussions Replies Latest Activity
Linda Burke

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

233 Aug 25
Reply by Linda Burke
Joy Lewis

Transplant Considerations: Things to think about when choosing a transplant center

Hi all,I know several of you have transplants on the mind or on your child's horizon. Here are some things to think about when choosing whe…

Started by Joy Lewis in Uncategorized

10 Aug 25
Reply by Cheryl Biermann
Joy Lewis

Current research

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 in Uncategorized

36 Aug 24
Reply by Kamal D Shah
KaTrina Slaughter

Treatment

Hi, We are in the military.  Hence, moving every 2-3 years.  It's time for orders again.  Wondering if anyone has any thoughts on Johns Hop…

Started by KaTrina Slaughter in Soliris

22 Aug 13
Reply by Cheryl Biermann
Christy

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

59 Aug 11
Reply by Cheryl Biermann
Phyllis Ann Talbot

Dialysis

Hi there - started this forum on dialysis - for now will include both PD and Hemo. Our son Hyde will be 3 in July of this year and he's cur…

Started by Phyllis Ann Talbot in Uncategorized

17 Aug 8
Reply by Linda Burke
maria vicenta carratala rios

low blood preasure

Hi members:   During three years my little son have had a high blood preasure controled with minoxidil, trandate, captopril and adalar reta…

Started by maria vicenta carratala rios in Soliris

2 Jul 2
Reply by Deborah Deffenbaugh
maria vicenta carratala rios

heart control

tomorrow morning when my son finish the hemodyalisis in the hospital, he has a control of a heart, he goes four times in a year, when we we…

Started by maria vicenta carratala rios in Soliris

1 Jun 26
Reply by Cheryl Biermann
Stacey

Soliris or kidney/liver transplant

Please, please please help me guys. I am so confused. I have been told so many pro's and con's for the dual transplant and the same for Sol…

Started by Stacey in Uncategorized

11 Jun 16
Reply by Linda Burke
Cheryl Biermann

Seizures

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

9 Jun 15
Reply by Linda Burke

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 "About aHUS" tab 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 2010 genetic testing and treatment.

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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