The Foundation for Children with Atypical HUS

Chloes day

Well let's start with some good news... Chloes heart is still strong thank god.. Now with labs which are still good well hemoglobin was 10 hematocrit is 30 and platelets were 250 and creatinine is .48 and bun 28 ldh is 215 so no solaris yet.. We will remain off epo and wait another month before labs unless she starts to get sick she qualifies except for her ldh and platelets so like I said we wait. I felt like a nervous wreck thinking of how tired she has been and how tired she will get..I pray that solaris will help this roller coaster ride of feelings we so often have.. The unknowns are scary but god has her best interest at heart..so I will blog on how she's feeling and every time we get labs.. Thanks for all the prayers and Iam so glad I have other people to connect with that go through what I go through and that worry bout their kids like I do.. I am truly blessed and it made my heart so happy to hear that sweet lil Hyde peed on his first tree... How Steller

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Comment by Grace on February 24, 2011 at 9:17pm
The waiting/worrying game is awful, especially when your little princess has to get sicker to get better! Hang in there and keep us posted.
Comment by Phyllis Ann Talbot on February 18, 2011 at 12:30pm
he he he - thanks Lisa!  And good luck to your sweet Chloe!

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...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

  

  
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.



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