The Foundation for Children with Atypical HUS

I am happy to announce that evans labs continue to improve and are all within normal limits..and on wed oct 28th evan had his phoresis catheter removed!! yayyy!! after a long 14 weeks he got to…

I am happy to announce that evans labs continue to improve and are all within normal limits..and on wed oct 28th evan had his phoresis catheter removed!! yayyy!! after a long 14 weeks he got to finally enjoy his bath time

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Comment by Christy on November 6, 2009 at 12:09am
Woohoo!!!
Comment by Lisa Goble on November 5, 2009 at 8:40pm
Yeah! praise God....we need to hear great news when it happens=).
Comment by Melissa Hearn on November 5, 2009 at 1:49pm
Splish Splash! Yeah Evan!!!!!!
Comment by lisa ann peterson on November 5, 2009 at 1:09pm
that was chloes fav part of getting the dialysis cath removed she got to take a bath and thats also the nice part about a port a cath its under the skin and she is able to bathe in a full tub of water she loves it.. iam glad to hear your good news
Comment by Cheryl Biermann on November 5, 2009 at 12:14am
Yeah, Evan-We're all splashing in the water right along with you!
Comment by Linda Burke on November 4, 2009 at 10:53pm
Now that's what I call a truly Happy Halloween! Best to you all !!!
Comment by Svetlana Finley on November 4, 2009 at 10:36pm
That is great news ;-)

WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!

The Foundation for Children with Atypical HUS 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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

  

  
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.



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