The Foundation for Children with Atypical HUS

Seminar at House of Parliament Jan 17th

Hi i was wondering if anyone who was attending this had received their invite yet?

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Permalink Reply by debbie thelwell on January 15, 2012 at 2:39pm
Hi Lisa
yeah mine came through last week have you received your yet?
Debbie
Permalink Reply by Lisa Barker on January 16, 2012 at 2:11am

I never got mine debbie, for some reason i cannot accept emails from ahus group and cannot send them to them either they always get returned. Emma Woodward has kindly forwarded me the email so know whats happening . See you there hun. x

Permalink Reply by debbie thelwell on January 17, 2012 at 5:55pm
Lovely to meet some of you today a moving and powerful message I hope was portrayed and will help to make a difference.Both patient speakers moved me to tears! Lets hope we all get the specialist service and treatment we are all hoping for it will help to end the stress and worry that living with aHUS brings.
Debbie x
Permalink Reply by Lisa Barker on January 18, 2012 at 5:13pm

The seminar proved to be a successful turnout and to listen to Vera and Emma's quite different experiences was an honour. I am so glad i went and feel very proud to be friends with such strong willed people.

Permalink Reply by Cheryl Biermann on January 19, 2012 at 9:53am

It sounds like y'all had a wonderful time, did you video the speakers?  It would be wonderful to have the video for our site.

Permalink Reply by Lisa Barker on January 19, 2012 at 2:25pm

Im not aware of anyone videoing it but they may well of done, i know cameras were not allowed in there so im not sure. x

Permalink Reply by Cheryl Biermann on January 20, 2012 at 9:14am

Thanks Lisa,

 

If anyone is aware of video, you can let it be known we would love to add it here and on the rare disease platform also!

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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!
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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.
  
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