The Atypical HUS Foundation

August 2013 Blog Posts (5)

Crazy Kidney Story that is local for me

http://gma.yahoo.com/ohio-transplant-victim-says-hospital-wasted-brothers-trashed-143207531--abc-news-health.html?vp=1

Read this story.... I don't know what type of kidney disease that she has, but it's absolutely terrifying that it could actually happen!

Added by Lisa Stockdale on August 31, 2013 at 11:02am — No Comments

Come to Orlando Sept. 20-21st

There's still time - REGISTER NOW!! 

NORD's 2nd aHUS Regional Meeting will be held on Sept. 20-21st at the Renaissance Sea World in Orlando, Florida.  There will be an September 20th dinner (7 to 9 pm) for attendees that Friday evening with an opportunity to connect with other aHUS patients and their…

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Added by Linda Burke on August 26, 2013 at 12:30am — No Comments

Looking for doctors

I am just curious where any adults with aHUS have received their medical treatment.  I think I would like to leave Montana to get another opinion, but I don't know where to go.  Thanks for any info you can give me!

Added by Kristen Bruner on August 5, 2013 at 6:02pm — 5 Comments

aHUS Regional Meetings - Sept through Dec 2013

We are pleased to announce that 2 rare disease organizations are hosting aHUS regional meetings this fall.  NORD is hosting a Sept 20-21 meeting in Orlando, with another chance to meet and learn likely to be in San Diego during the first part of December.  (NORD is the National Organization of Rare Disorders at www.rarediseases.org)

Global Genes will be hosting an aHUS Regional Meeting in Houston Oct. 25-26 with another opportunity to meet…

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Added by Linda Burke on August 4, 2013 at 9:26am — 1 Comment

stomache pains

my son dean has been I think stomache it is hard to tell for sure because he is 13 months old and he I can only guess what he is doing he will cry for a hour and half holding on to his stomache and then if you sit him on his butt he will scream bloody murder and if you lay him on his back he will do the same thing the only thing that will not make him cry when he is doing it is hold him up straight and if you try to give a bottle he will reject it and he will not eat he does not have gas…

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Added by ronalda anastasio on August 1, 2013 at 9:35pm — 11 Comments

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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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