The Atypical HUS Foundation

Forum Discussions (121)

Featured Discussions

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 UncategorizedLatest 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

Woman with aHUS

Well......here we are down a journey we never expected to be going down, but these are the cards we have been dealt. So, you ask yourself n…

Started by Crystal Gimenez in Soliris

1 3 hours ago
Reply by Linda Burke

MCP/CD46

Hi there! I'm new to the site....anyways last Christmas my 18 year-old sister was diagnosed with Atypical HUS. We just recently got her gen…

Started by Lacey Wallace in Soliris

0 May 13

Stopping Soliris

Hello All, I am a new member. My friend was diagnosed with aHUS postpartum. She recovered completely once she was started on Soliris. She…

Started by Uma in Soliris

4 May 7
Reply by Uma

Infusion complications after 14 months?

Hello, My son, Evan, was diagnosed in November of 2013, right after turning 10.  Luckily, his doctor at Akron Children's Hospital zeroed ri…

Started by Sharon Wooldredge in Soliris

4 Apr 21
Reply by Anne Bruns

Just on my mind

We are all on this roller coaster ride of Ahus together. Not so long ago we suffered alone. I'm sad that the number of us are growing but w…

Started by Jill Ziegler in Soliris

2 Apr 21
Reply by Anne Bruns

Diagnosed with aHUS 6 months ago

Hello there I was recently diagnosed with aHUS when hospitalized 6 months ago Not knowing what was happening on Oct 6th 2014 I went to the…

Started by Donna in Soliris

4 Apr 21
Reply by Anne Bruns

My journey with Ahus

I'm a 36 year old woman, mother of two wonderful kids (14 & 15) and military wife. I'm 7.5 years post op from a liver transplant. When…

Started by Aimee Elizabeth LaVoie-Vasser in Soliris

1 Apr 15
Reply by Paula Blanchard Lamigo

DO WE NEED AN EUROPEAN NETWORK OF aHUS PATIENT ORGANISATIONS

I have posted this on the Eurodis aHUS Community pages too. A European aHUS/SHUa Patient Organisation Network aHUSUK has been very busy wi…

Started by Len Woodward in Uncategorized

14 Mar 27
Reply by Len Woodward

Potential New Treatments

Last year, we heard of a press release highlighting OMS721 as a potential new anti-complement drug in this blog post. I couldn't find any a…

Started by Grace in Uncategorized

23 Mar 19
Reply by Grace

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

155 Feb 9
Reply by Len Woodward

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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 Linda@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 Linda@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 $825, and is offered with your gift of $295.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Interested in a pearl bracelet as a Mother's Day gift?  Order by May 2, 2015 and know that supplies are limited as each bracelet is custom made.

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 linda@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 Linda@atypicalhus.org

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