The Atypical HUS Foundation

May 2013 Blog Posts (6)

Cassie added a comment to your profile on The Foundation for Children with Atypical HUS ------------ It's been so long since I have been on here wow can't believe it. The results of his tests showed…

Cassie added a comment to your profile on The Foundation for Children with Atypical HUS



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It's been so long since I have been on here wow can't believe it. The results of his tests showed unknown cause he was diagnosed ahus. Our current situation: I'm happy to report that Evan is doing great no set backs or relapses at this time. He continues seeing the kidney doctors (we up to 1 time a year) we just recently went to an appt and everything still looks perfect. My… Continue

Added by Cassie on May 22, 2013 at 11:58pm — No Comments

An Isolated Incident?

It has come to my attention that there is some confusion about what Soliris will and will not do.  Let me tell you what it does first and then we'll talk about what it does not do.  Soliris shuts off the compliment system which activates aHUS activity, which, of course can be devastating.  Fevers are not indicators that will be fixed by an infusion of Soliris.  Fevers can mean line infections, which Soliris doesn't treat, you need an antibiotic for that, fevers can mean meningitis or flu, a…

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Added by Cheryl Biermann on May 21, 2013 at 7:56pm — No Comments

My story

I am a 38 year old mother of 3 great children.  Just before Easter this year, I was admitted into the hospital.  Originally I went to the Doctor because I was having clotting in my nose, severe headaches, and vomitting.  The Dr. did a CAT scan of my head to make sure there was nothing going on there because of the headaches.  He also did lab work.  The lab work came back and I was in acute renal failure.  My creatinine was 10.6 (normal values are up to 1.3).  He admitted me to the hospital…

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Added by Kristen Bruner on May 17, 2013 at 1:00pm — 2 Comments

Biopsy update

Chloe's biopsy showed mild inflammation of the intestine. Doc said nothing to be super concerned about. He thinks its abdominal migraines and he is starting her on some elovil (sp) she had to go get an EKG to make sure her heart is strong enough for the medication. I will let you guys know what the EKG says and if the medication works

Added by lisa ann peterson on May 17, 2013 at 12:37am — 1 Comment

prayers for our family in the UK

Just a reminder to add the UKaHUS team to your prayers tonight, they presented their patition to parliment today.

Added by Cheryl Biermann on May 14, 2013 at 9:01pm — 4 Comments

NORD hosts aHUS Mtg in New Jersey

 

 

Regardless of air traffic snarls and long car trips, aHUS patients and their families traveled to New Jersey for a regional aHUS meeting sponsored by NORD (National Organization of Rare Disorders) on April 26th and 27th,  2013.   The event began with a…

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Added by Linda Burke on May 2, 2013 at 7:20pm — No 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.
  
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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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