The Atypical HUS Foundation

Forum Discussions (123)

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

FH auto antibodies

Ethan's genetic testing was clarified in Iowa that he has the FH auto antibodies instead of the FH mutation we thought he had. Dr. Nester t…

Started by Anne Bruns in Soliris

1 on Sunday
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

166 Aug 25
Reply by Len Woodward

ahus Foundation

Does anyone know if there are brochures or fliers available with information on the ahus Foundation? I need 500 for an event I'm hosting.…

Started by Crystal Gimenez in Uncategorized

2 Aug 14
Reply by Linda Burke

Trip to Florida

Taking Cole (7 yr old aHUS patient) to Destin, Florida.  Got information from Alexion regarding resources in the area.  Doctor has not resp…

Started by Linda Montes in Soliris

2 Jul 13
Reply by Barbara Farcher

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

10 Jul 6
Reply by Len Woodward

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

6 Jun 15
Reply by Cheryl Biermann

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

3 Jun 15
Reply by Cheryl Biermann

aHUS college student - accommodations

As my son returns to college this fall, I have lots of questions. We have attended a meeting with at the Student Disability Center to sign…

Started by Kerry Waters in Uncategorized

5 Jun 12
Reply by Kerry Waters

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

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

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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 $925, 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 this summer?  Orders received after June 20, 2015 will not be shipped before July 10th.  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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