The Foundation for Children with Atypical HUS

Hey there everyone - just in case you haven't been able to get on the carepage - Heather mentioned she was having some problems - I'm actually breathing a little easier - see latest update below -…

Hey there everyone - just in case you haven't been able to get on the carepage - Heather mentioned she was having some problems - I'm actually breathing a little easier - see latest update below - but basically so far so good! ;-)

Our night and PD!!

Posted 2 minutes ago

Hey there everybody - I'm sure you are all SICK of hearing from us by now - will try to just update once a day until we get home. Things are mostly good this morning (espcially on the big stuff). I was honestly a little nervous even last night after surgery - but Hyde did his full dialysis last night only 4 hours after surgery and it went well so I'm feeling much better.

Hyde's not feeling quite as good - having some pain from surgery obviously but he's getting to eat this morning and he of course wants chicken fingers - so trying to see if the hospital will make them at 9 in the morning - if not Aunt Sarah will be driving around Atlanta looking for some ;-). His blood pressure was actually LOW last night but back up to 'normal' for us this morning so he got his regular BP meds - we expected this and are hoping he can slowly drop some of these over the next few months. Thanks again and we'll let you know as we find out any more.

Bill, Phyllis, Ruth, and Hyde

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Comment by Heather Still on March 3, 2010 at 9:21am
So happy that the surgery went well....thanks for the update :)
Comment by Colette Ann Frysz on March 3, 2010 at 8:31am
Glad the surgery went well. Bp's will take a little time yet to stabilize. Have patience and faith.
Comment by Jodi Kayler on March 2, 2010 at 9:59am
yay!
Comment by Svetlana Finley on March 2, 2010 at 9:37am
Thanks for update, yes i couldn't get in to carepage last night. I am glad everything went well, praying for fast recovery, get blood pressure down and get home soon ;-)

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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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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