The Atypical HUS Foundation

July 2012 Blog Posts (5)

My son Grant was diagnosed with aHUS on Mother's day in 2010 at age five. He had typical symptoms of a stomach bug .  The next morning my husband noticed his urine was coca-colored.  Later that day a…

My son Grant was diagnosed with aHUS on Mother's day in 2010 at age five. He had typical symptoms of a stomach bug .  The next morning my husband noticed his urine was coca-colored.  Later that day after being initially diagnosed in a local ER he was rushed by ambulance to Children's hospital in Detroit, MI.  There he was in the ICU for a couple of days and then was able to leave by about day 6.  His case would be considered mild since he never required any interventions.  He came very…

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Added by Amanda Summers on July 30, 2012 at 11:03pm — 1 Comment

Introducing our MEDICAL ADVISORY PANEL

The Foundation for Children with Atypical HUS is pleased to introduce its Medical Advisory Panel

 We appreciate their service and recognize that these physicians’ unique blend

of skills and experience offer valued guidance in core areas important to aHUS patients and their families.

Dr. Craig Belsha                    Dr. Joseph J. Krug                    Dr.…

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Added by Linda Burke on July 27, 2012 at 1:00pm — 3 Comments

It's been quite a while; busy, busy, busy!

I know that many of you are curious to find out how I have been doing with my new job and if I am enjoying it? Well, I am doing splendid! I am working like crazy now, and I am slowly regaining my confidence back when I am performing certain tasks at work; such as blood draws, because just like humans dogs and cats don't like to be poked more than once, but sometimes it just happens that way :( When I am performing certain tasks, I try to think of myself in that animal's situation, do I want…

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Added by Jessica Olivia Frysz on July 25, 2012 at 9:57am — 1 Comment

Our vacation nightmare

Last year my family and I went on vacation to the Isle of Palms in South Carolina. We drove from Arkansas to the coast of South Carolina! We stopped the first night in Dollywood, my sister is a huge Dolly Parton fan :) By the way, my name is Kelli Willbanks. My parents, my sister, her husband and his son, my husband, our two kids (Olivia and Trevor) and I went on this vacation. We were soooo excited, we had never been to that part of the ocean before!

Olivia was three years old then (July… Continue

Added by Kelli Willbanks on July 20, 2012 at 10:56am — 9 Comments

New American Law: The FDA "Safety and Innovation Act"

Enacted into American law on July 9th, 2012, the U.S. Food and Drug Administration (FDA) Safety and Innovation Act is noted as including "the most groundbreaking measures for rare disease patients and their families since the Orphan Drug Act of 1983".

 

"This legislation represents true progress for people with rare diseases, who often struggle to access treatments for their disorders," NORD President and CEO Peter L. Saltonstall said.  The Safety and Innovation Act renews user…

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Added by Linda Burke on July 12, 2012 at 12:00am — 1 Comment

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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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