The Atypical HUS Foundation

Forum Discussions (135)

Featured Discussions

Soliris

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

Started by Linda Burke in SolirisLatest Reply

aHUS Complications: Potential Impact for Multiple Organs

 Atypical HUS - It's Not Just About Kidneys       The topic of aHUS complications has surfaced in multiple commentary, including aHUS co…

Started by Linda Burke in UncategorizedLatest Reply

RESEARCH Forum

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 and excruciating leg pain

Hello everyone , this is my first time posting and I'm looking for some answers, suggestions or maybe just comfort. I want to start off by…

Started by Cristian Arias in Soliris

0 14 hours ago

Low Hemoglobin

My husband is on Soliris since May of 2016.  His kidney function has improved enough to get off dialysis, however he has noticed he has slo…

Started by Betsy Pennington in Soliris

4 Sep 5
Reply by Betsy Pennington

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

7 Aug 28
Reply by Len Woodward

ADULTS with aHUS

 Over the past couple of years, new information about atypical HUS has been slowly filtering from the research and clinical arenas into jou…

Started by Linda Burke in Uncategorized

188 May 1
Reply by Robert Kaplan

To test or not to test?

Hi! I was diagnosed with AHUS in October. My genetic testing showed that I have a mutation in the CD46 gene, autosomal dominant. I have 4 c…

Started by Tricia in Uncategorized

2 Apr 28
Reply by Debbie Griggs

Soliris: Stop or Continue?

My sister has been on Soliris for several months and has shone marked improvement. A month ago she suffered a seizure that resulted in a ho…

Started by Rebecca Redshaw in Soliris

2 Apr 11
Reply by Rebecca Redshaw

aHUS and eculizumab

  http://sidharthsethi.blogspot.com/2016/04/eculizumab-for-ahus-first-use-in-india.html This article was written about our son, Jacob. We…

Started by Samantha Blaszynski in Soliris

6 Apr 11
Reply by Len Woodward

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

13 Apr 6
Reply by Cheryl Biermann

EMPOWERING THE USA REGIONS

It is a hard job to run a patient organisation. There are so many things that a patient organisation has  to do. In a long forgotten forum…

Started by Len Woodward in Soliris

0 Mar 4

aHUS websites

As someone who for four years has had the task of introducing and maintaining a website on behalf of the UK's aHUS patient organisation I c…

Started by Len Woodward in Uncategorized

0 Dec 26, 2015

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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 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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