The Atypical HUS Foundation

Forum Discussions (138)

Discussions Replies Latest Activity

cards!

Jodi Kayler is our go to person for the cards for sale project. Due to the short amount of time, she has decided to go with blank cards des…

Started by Cheryl Biermann in Uncategorized

15 Sep 21, 2009
Reply by Svetlana Finley

ssi

i was just curious if anyone else has had a problem gettting social security for their kiddo they say that my daughter is disabled but not…

Started by lisa ann peterson in Uncategorized

6 Sep 17, 2009
Reply by KaTrina Slaughter

Leg cramps

I saw some post has that their child has leg cramps issues, and wondering what u do about it. Anna gets them almost every week and they are…

Started by Svetlana Finley in Uncategorized

3 Sep 13, 2009
Reply by Cheryl Biermann

Nephrectomy

Hi all--- hope everyone is having a peaceful holiday weekend. As for us, we are having problems with Aiden's blood pressure. It has been on…

Started by Christy in Uncategorized

11 Sep 10, 2009
Reply by Donna Kolp

Transplant

I am a 34 yr old transplant patient. I had postpardum HUS/TTP. I was on dialysis for 3 years (hemo an i also tried pd for a bit). If there…

Started by Desiree L Mayne in Uncategorized

9 Aug 17, 2009
Reply by Desiree L Mayne

20 years worth of dialysis, is it worth it? oh yes it is!

Hi everyone, I was diagnosed with AHUS when I was 11months old and have been on dialysis, my entire life, except for when I received a tran…

Started by Jessica Olivia Frysz in Uncategorized

0 Aug 10, 2009

Growth Hormone

Aiden's nephrologist wants to get him started on Growth Hormone injections soon and we are now just waiting on the insurance approval to ge…

Started by Christy in Uncategorized

5 Aug 3, 2009
Reply by Jessica Olivia Frysz

TRALI - Precautionary Note about Infusion of Blood Products

"Male donor plasma ONLY" was marked on both Hunter and Skyler's medical records. Hunter had at least one, probably two, instances of TRALI…

Started by Linda Burke in Uncategorized

4 Jun 29, 2009
Reply by Linda Burke

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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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