The Atypical HUS Foundation

August 2012 Blog Posts (6)

Stopping Soliris

Hi all , our son Ryan has been on Soliris now since February this year and doing great on it but because he went into remission after his first episode of AHUS in 2010, our consultant is going to stop his Soliris now in a week and see how he goes.  The thought is he could be in remission and the only way of finding out is to stop it (he was in remission for 15 months before relapsing in Feb 2012).  An anxious time, of course the hospital will monitor his bloods, the plan is to test his…

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Added by sabrina kiernan on August 31, 2012 at 6:30pm — 8 Comments

One Crazy Year

A year from today things were starting to go down hill. Kidneys stopped, eye sight was terrible, pale face & constant vomiting. Nobody could ever understand how grateful i'am to be here in this world being able to type this and telling the world my story. I was that one 15 year old out of millions who only thought about death. Boy was I wrong, this crazy, emotional, beautiful ( in a weird way ) experience made me a stronger person and a believer of miracles because there is truly someone…

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Added by Ivette Rios on August 29, 2012 at 7:04pm — 2 Comments

School and the aHUS Child

As the school bell rings in the fresh start to a new school year, your child is probably be well prepared in terms of school supplies and a great attitude toward a new year of learning.  Consider another route toward helping to optimize their school success.  Does your aHUS child have an I.H.P. in place, with an I.E.P and  a 504 plan?  No, it’s not alphabet soup on the school lunch menu but rather educational jargon asking if your child’s public school staff has met with you, determined…

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Added by Linda Burke on August 21, 2012 at 2:00am — No Comments

Random blogger

When i was serving at my job last night i met this lady who blogs. She asked me about my tattoo and what it meant to me and i told her how i fell ill and it helps me to move on in life ("this too shall pass"). She had me tell her more and more about my story and she posted this blog this morning http://breathewithyourheart.blogspot.com. There are a few errors in spelling and such, but some people are just so thoughtful!

Added by Danielle Giardina on August 18, 2012 at 9:11am — 1 Comment

Christian's Conquest - Aug 26th is the Kidney Kickoff!

 Christian's Conquest:  Join their event  “Kidney Kickoff” and rock the Pontchartrain Yacht Club August 26th   in Mandeville, LA !  Celebrating Christian's placement on the kidney transplant list, this fundraising event will feature a silent auction of great items and services as well as a Celebrity Raffle for a pair of 2012 LSU Season tickets in Sec 304 of Tiger Stadium!

LSU Fans: Grab those tickets now, and get ready to bid on a signed football from…

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Added by Linda Burke on August 16, 2012 at 11:10pm — No Comments

summer fun

Hi all!

We have been enjoying this summer so much!  We have been watching Nathan grow!  Nathan eat, a lot of eating!  Nathan has learned to ride a bike and can now swim too!  Like everyone else, summer is crazy busy here in the Biermann household, we have three employed kids and have been driving the youngest back and forth to her job, which she loves, at Six Flags. 

Right now, we are gearing up for a trip to St. Augustine's, FL, so if anyone wants to let us in on any…

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Added by Cheryl Biermann on August 2, 2012 at 2:04am — 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.

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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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