The Foundation for Children with Atypical HUS

update on evan

it is going on 4 weeks since evan has been home. it is also going on 4 weeks tomarrow since he has had any plasmapheresis. all of his lab values are back to normal. drs just told us that most of his genetic testing has come back and thats negative..bad news is there is still no cause..they seem to think he is in that small percentage that are idiopathic..they really are not sure what to think because every test has come back negative or within normal limits..they say that he has almost all of his kidney function back and within a week they are going to be taking his mediport out..yeahh..

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Comment by Svetlana Finley on October 17, 2009 at 7:37am
Awesome news, Annas all testing back with all normal. I also agree with Cheryl about the line, we went tru that 3 times last year and end up puting new line few weeks later.
Comment by Colette Ann Frysz on October 16, 2009 at 8:47am
Cassie,
Glad to hear that Evan is doing so well. I'm glad the genetics are negative but I think I'd keep pushing to find out the whys.
Comment by Christy on October 14, 2009 at 12:24pm
Cassie--yay for good news! Aiden's tests are the same as Evan's --- all normal or "no known mutation" Guess our little guys didn't read the AHUS instruction manual! :)
Comment by Cheryl Biermann on October 14, 2009 at 10:37am
Cassie, watch for the conference results, maybe there will be some answers for you. Have you posted anything for the researchers? I have been nervous for you about pulling his line, so I have asked the researchers to explain when you keep one in and when you pull it. You may want to ask them something about Soliris and idiopathis Atypical Hemolytic Uremic Syndrome.
Comment by Lisa Goble on October 12, 2009 at 4:35pm
awesome! so happy for all of you:)
Comment by Cheryl Biermann on October 12, 2009 at 4:00pm
Wonderful to hear about Evan! Good luck.
Comment by Linda Burke on October 11, 2009 at 11:07pm
So glad to hear that all of Evan's news is positive - how terrific is that! Keep us updated with more good news ... :)

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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.

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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.
  
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