The Atypical HUS Foundation

January 2012 Blog Posts (9)

Update on Anna Finley

Hi everyone,

First i want to sat Thanks to Cheryl for keeping updating on Anna and thanks everyone to continue praying for her.

Anna is full of mistery, no one knows what is going on with her right now. All her labs are good except blood in her urine, her Platelets are normal it looks like everytime we do labs they r higher and higher hmmm... She has some back pains and not eating very much.

Yesterday we were first ones to see our doctor and last ones left her office…

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Added by Svetlana Finley on January 31, 2012 at 7:48am — 1 Comment

Anna's update

Svetalan told me yesterday that Anna appeared to be getting better and they were just waiting for some labs, things seemed to be semi normal with them being watchful.  Last night, however, Anna had such severe back and stomack pains so they took her to their local hospital and waited four hours.  The only thing they did was to suggest vicaden.  Anna will be seing her nephrologist in the morning. 

 

For those of you who may not know Anna often had back pain associated with her…

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Added by Cheryl Biermann on January 29, 2012 at 10:00am — No Comments

Back in the hospital and the 'bad' anniversary

Well - first of all - so sorry for taking SOOO long between updates! Things were rocking along and I honestly forgot about it and then was waiting to do one on a couple of good things coming up but apparently Hyde had other plans :-\.

First things first - we are here at Egleston, were admitted yesterday morning, but hoping this will be a very quick stay ;-). Since I haven't updated in a while - here's what sort of led us here. Hyde has been doing really well,…

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Added by Phyllis Ann Talbot on January 28, 2012 at 10:17am — 2 Comments

Anna Finley's on her way to Portland

Anna's mother reports she is having strange purple spots and that the labs indicate some blood in the urine, they are taking platelet counts and hoping to begin Solaris. Svetlana and her family woul appreciate prayers.

Added by Cheryl Biermann on January 27, 2012 at 12:29pm — No Comments

Share your video in support of Rare Disease Day!

Alone we are rare…together we are strong.

It's not just the slogan for the global campaign marking Rare Disease Awareness Day on February 29, 2012. It's also the rallying cry for "SOARING VOICES" a grassroots effort by patients, friends, and families who…

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Added by Linda Burke on January 25, 2012 at 5:30pm — 3 Comments

Trip to California-complete success!

 

Sorry everybody for not posting for a while. I was very busy with work and getting ready for a trip, which I took this past weekend to California. The trip I took was to go to an event sponsored  by the Renal Support Network (RSN) called the Renal Teen Prom. Yes, I know I'm not a teen anymore, but this event is for patients 14-24 years old. This event is like no prom you or I have ever attended at our high schools. This prom is a big party!!! Hundreds and I mean HUNDREDS of kidney…

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Added by Jessica Olivia Frysz on January 18, 2012 at 1:00pm — 1 Comment

Are there any Cardinal Fans out there?

 

        SUPPORT THE FOUNDATION FOR CHILDREN WITH ATYPICAL HUS FOR AS LITTL AS $5

 

Hi again...it's that time of year for The Foundation for Children with Atypical HUS, St. Louis.  This might be a long shot, but I know the Cardinals have far reaching fans.  This year you may want to participate in our raffle, it is chance to win

a David Freeze autographed and framed picture of his walk off home run this year OR third prize, a Whitey Herzog ouautographed…

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Added by Cheryl Biermann on January 18, 2012 at 9:40am — No Comments

This is a link to a story related to kidney transplant and it really got my fire up, I thought others here might share my view and want to sign a petion helping this family.

I you go to the link, you will find a story, that I cannot believe is happening in this country, especially because the family is willing to be the donor.  There is a petition to sign as well.  I'm not normally too much of an acivist, but I think we all can see the value in a kidney transplant  for anyone dealing with the hardships of kidney failure.…
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Added by Cheryl Biermann on January 15, 2012 at 12:10pm — No Comments

Hi everybody!

Just popping in to say hello. It's been whirlwind down here in New Orleans this last year. Sorry we missed Iowa - Aida and I would have loved to catch up again.

It was real nice visiting in CT - even if it was such a short time together.

Christian is doing real well - he has started Soliris as of Nov 2011 and is being worked up for transplant by Texas Children's.

Hope everyone is doing well and it's great to see so many stories of progress with…

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Added by Gene Billingsley on January 6, 2012 at 12:16am — 1 Comment

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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.

************************

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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