The Foundation for Children with Atypical HUS

Still doing good

Hey everyone - just to let you know - Hyde's still doing really well - he stayed with Bill last night and did well - only my tough little kid would rather deal with the pain of having two organs taken out than to take any medicine he's not used to :-(. He did take some of the 'good' tylenol yesterday midday - and took a long nap and then was able to get up and move around a little bit. According to Hyde he's 'creaky' and whenever we got to get him us he tells us to 'be caweful mommy!'. His labs were all stable for him yesterday - so that's good and he again did well on his normal full dialysis last night - so that's all great. Of course his blood pressure is back up last night and this mornig :-( but the dr's had told us to expect that. Hopefully this will slowly improve over the next few months.

The 2 big exciting news things for today - they've mentioned the word H-O-M-E to us!! (Can only spell it to not jinx the possibility). Possibly even today or tomorrow - we'll see. Again - so weird to me that we were here for 5 weeks in a row one time to get BPs stabilized but can have 2 organs you need to live removed and have the possibility of going home after a couple of days - WEIRD! The other WAY exciting news this morning - Ruth had to call and tell me she had a loose TOOTH!!! - I'm telling you - big happenings around the Talbot house! of course I had to totally pretend excitement while I was about to cry - how could my baby be old enough for a loose tooth? Didn't she just stop bottles and get out of diapers yesterday??!? Oh well...

We'll let you know once we know anything for sure and update any new exciting news on the Hyde hospital front or the progress of the loose tooth as it happens :-)

Thanks again to everyone that has followed us on this LONG LONG journey - we are so lucky to have been blessed wtih 2 of the most amazing kids ever plus the greatest group of family and friends anyone could ask for!

Thanks again -
Bill and Phyllis

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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!
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.
  
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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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Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
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