The Atypical HUS Foundation

January 2014 Blog Posts (8)

Quicker Genetic Testing

I saw online a couple days ago that there is a genetic test for aHUS in Wisconsin that only takes 28 days. It took mine over 3 months to be completed. However, mine still didn't give us an answer, since my aHUS was one that hasn't been identified yet. Hopefully this helps someone that is looking for a quicker way to get genetic testing done.

Added by Lisa Stockdale on January 31, 2014 at 10:52pm — 7 Comments

Australian submission for approval of Eculizumab/Soliris for aHUS

FYI, Upon request of Kerri Gray, I have just submitted The Foundation for Children with Atypical HUS's plea to the Australian Department of Health/PBAC to approve Eculizumab, (Soliris) for use in aHUS patients. The Foundation passionately supports Austra and other countries battling to have their case made before their governments. Praying for a unanimous selection of Soliris as the current Gold Standard in treating aHUS.…

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Added by Cheryl Biermann on January 31, 2014 at 4:54pm — 1 Comment

THE Best REFERENCE "Book" of aHUS FACTS

 
A MUST - READ for aHUS patients, families, and Caregivers !
 
     Heavy on medical facts and rich with resources to delve into, the National Institutes of Health's GeneReviews  TM is your most…
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Added by Linda Burke on January 22, 2014 at 11:28pm — No Comments

I hesitate to post this update, but maybe it has new information for someone else

Since about August, Nathan has had an elevated creatnine, with the hot, humid Missouri weather, of course we wondered if this was due to insufficient fluids, over the months this issue has not gone away and sometimes his creatnine spiked at pretty high levels.  The theories were, insufficient fluid, so we made sure to increase his fluid at school, he was to visit the nurse three times a day to refill his water bottle, we watched at home and tried to be diligent without sending him into a…

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Added by Cheryl Biermann on January 21, 2014 at 5:26pm — 1 Comment

Our cross country travels for aHUS diagnosis help

Hello everyone, I finally had a free minute and wanted to say hello to everyone. I hope your Holidays were blessed and uneventful.....

 

Since my last frantic posting (right after diagnosis) we have been to Chicago IL, San Diego CA, Iowa City IA, and Columbus OH.

We met some awesome families, patients, care givers, physicians, nurses etc. in Chicago and San Diego, and met the amazing Dr.Carla Nester and her nurse Monica at the University of Iowa, and the renowned Dr.…

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Added by Kris Carrender on January 21, 2014 at 3:07pm — 3 Comments

My Heart is Heavily Burdened

Today I am appealing to you urgently for prayer. Today I am writing to tell you a story.  A story of Bianca Scott of Australia.  Two days I have know of her existence.  In that time, I have posted her story of FB, signed her petition to her government to approve Soliris and tonight been shocked to see a post from her mother stating she has taken a turn for the worse.  In December, Bianca, like many other girls in Australia, was enjoying a formal dance.  Sometime since then, she became sick…

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Added by Cheryl Biermann on January 10, 2014 at 10:24pm — 2 Comments

Kidney Camp 2014 - New York

Announcing Kidney Camp 2014 at Frost Valley YMCA in New York!

 

In partnership with the Ruth Gottscho Kidney Foundation and Children’s Hospital at Montefiore, Frost Valley YMCA invites…

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Added by Linda Burke on January 8, 2014 at 11:50am — No Comments

On Twitter? Enter to win $1,000 for our Foundation from Jet Blue!

Here's the tweet with the rules:

@JetBlue: Chip away at your cause & tweet us to win $1,000 for your charity by using #ICHIPINFOR by 1/20! Terms apply. http://t.co/FG8iM5oDFa

Here's an example (my tweet:):

@DanaSimone1: .@JetBlue #ICHIPINFOR @AtypicalHUS, an extremely rare blood disease that damages kidneys and other vital organs, affects kids, has no cure

Good luck to us!

Added by Dana M Simone on January 3, 2014 at 4:07pm — 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.
  
• • • • • • • • • • • •
  
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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