The Foundation for Children with Atypical HUS

Hi :)

It has been a long while since I was posting here.  Ania had a long time of  peace- her labs were stable and she had normal live.  But she had grown quite a lot during this year and now it seams that her kidneys are not in enough good condition to manage with that bigger body.  We consider Soliris treatment, but we have to get the approval  from national health care center.

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Comment by Cheryl Biermann on December 18, 2013 at 11:08pm

hi Zofia, as Linda suggested, maybe the rareconnect site will have some answers about how to obtain Soliris,  I will pray for Ania and please do keep us posted.  Growth does seem to pose problems for kidney patients and transplant patients in general.  Good luck.

Comment by Zofia on December 16, 2013 at 3:46am

Hi Linda & Svetlana :)

Linda I just checked this page, I will log onto it.  I didn't found there anyone from Poland. As far as I know there are 3 other pediatric patients with a- HUS in my country. One even in our clinic.

Linda, can I use some of articles from this website, translate them to polish & publish on the polish a- HUS web side? When I will have them ready, maybe it would be also good to put them somewhere here ? What do U think?

Comment by Svetlana Finley on December 14, 2013 at 11:27pm

HI!!! It is great to hear from you!! keep us updated we will be praying !!

Comment by Linda Burke on December 14, 2013 at 10:10am

It's good to hear from you Zofia, though I wish it were with better news.  Have you logged onto our global RareConnect page with a post about the difficulty involved with obtaining Soliris approval from your nation's health services? 

There are EU patients and parents facing similar situations with Soliris access in their countries, so that would be a good place for sharing insights.  Keep us posted, we care!

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WELCOME - 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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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...

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Your tax-deductible purchase of one or more bracelets will directly fund research to help 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 our research efforts of the Foundation for Children with atypical HUS at www.atypicalhus.org and www.atypicalHUS.net


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:

Foundation for Children with Atypical HUS
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 Linda@atypicalhus.org


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