The Atypical HUS Foundation

Forum Discussions (116)

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

Soliris

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

Started by Linda Burke in SolirisLatest Reply

Discussions Replies Latest Activity

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 on Friday
Reply by Len Woodward

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

0 Mar 23

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

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

3 Mar 18
Reply by Cheryl Biermann

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

aHUS triggered by pregnancy

My pregnancy triggered aHUS shortly after I had my son. I had months of plasma exchanges and I'm still continuing dialysis. My body respond…

Started by Katie Castle in Soliris

1 Jan 21
Reply by Len Woodward

aHUS After Child Birth

Hello! I'm very newly diagnosed with aHUS & feel like I'm in a tail spin. I'm 38, very healthy & active, just gave birth to twins,…

Started by Becca in Soliris

5 Jan 17
Reply by Maria

Need some assistance from others

I am dealing with an insurance company that has denied access to a Critical Care claim because Will, our son with aHUS, is no longer needin…

Started by Kerry Waters in Soliris

2 Jan 11
Reply by Kerry Waters

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 Uncategorized

88 Nov 21, 2014
Reply by Len Woodward

aHUS India

This forum is for patients, caregivers and medical professionals based out of India. Things are very different in India from many other co…

Started by Kamal D Shah in Uncategorized

9 Nov 21, 2014
Reply by Kamal D Shah

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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.)

  

  
Or you can donate a specific dollar amount-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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