The Foundation for Children with Atypical HUS

and all of my kids are sick, and I'm sick too......I hate it :(. But as far Ania is doing great, no sins of relapse. We are going on Monday for our FFP , and She well have some medical tests done, so we well see.

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Comment by Zofia on November 6, 2009 at 4:17pm
Thanks:) We are much better :).
Comment by Cheryl Biermann on November 5, 2009 at 9:03am
Just checkin up on you, have the illnesses begun to get better yet?
Comment by lisa ann peterson on October 30, 2009 at 6:15pm
iam sorry your kiddos are sick and its the worst when mom is sick tooo.. hope you all get better soon
Comment by Lisa Goble on October 30, 2009 at 5:45pm
thinking about you guys, praying the virus is short-lived with out any further complications. It stinks to be sick. Take care.
Comment by Svetlana Finley on October 30, 2009 at 3:54pm
Same is at our house kids are sick and Anna now is sick, but she seems doing well. Praying for your family and better labs on Monday
Comment by Cheryl Biermann on October 30, 2009 at 10:52am
Oh, so sorry, It's really tough being sick when you're kids are sick, much less all the stuff with Ania! Praying it is short illness for everyone.

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.
  
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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...

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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
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