The Foundation for Children with Atypical HUS

Chloe has been receiving Solaris treatment for almost two months now and it hasn't changed any numbers I didn't notice any change in her energy level and I was saddened at the thought that it might not be working, and today Chloe had treatment and labs and her haptaglobin was at 104 it normally sits at 30 to 40 Chloe today was in normal range my heart is leaping with joy as I think that finally it is an answer to our prayers Chloe isn't hemolyzing that is awesome :) also Chloe was taking a total of 12 pills a day and for the first time in almost five years as well Chloe is now only on a total of 5 pills a day and only two pills a day are blood pressure pills... My heart is very happy and I'm very thankful to the blessing from god today..

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Comment by Barbara Farcher on January 28, 2013 at 3:56pm

awesome!

Comment by Linda Burke on January 23, 2013 at 11:14pm

Glad to hear that things are looking up for your Lil' Miss!  Sending a happy hug, Linda

Comment by Svetlana Finley on January 22, 2013 at 1:18pm

awesome, great news, finally something helping and i am glad they finally started her on Soliris. Are they will keep Soliris for life?

Comment by Cheryl Biermann on January 22, 2013 at 10:02am

Awsome!  Chloe is living proof of low level aHUS activity, I think we were all holding our breath, Lisa.  Maybe she will wobble in the beginning like the rest of thepatients, but keep the faith!  saying a prayer of thanks too!

Comment by Donna Kolp on January 21, 2013 at 10:07pm

Yay!!!! So happy to hear she is doing well!!! Prayers for Chloe's continued good health :)

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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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

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
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