The Foundation for Children with Atypical HUS

lil miss chloe

lil miss had her check up on wed and well the kidney function is better whoop whoop... her blood pressure is 119/78 and her hemoglobin is 10.6 and her hematocrit is 27 and her platlets are 220 and her albumin is 3.4.. we also found out that the protocol for solaris is supposed to be approved in november i dont know much more but that hopefully by the end of the year she can do the study but she has to relapse first.. i keep hearing diff dates but dr. h said that it should be approved by the end of nov.. i said we will see... he says chloe is a perfect canidate for this study.i feel like we have been waiting forever but in a reality we have only been doing this for 2 1/2 years but it feels like an eternity.. life is kinda mellow right now lil miss starts school on wed i dont know what iam gunna do without my best friend to hang with me during the day but iam sure i will survive besides i said i would vouleenter in her class a couple days a week to help keep things clean, so i can stay sane..the 2nd annual tuff hat tournement is coming up and we are hoping to give a lrg donation to the foundation well i say large for a community that is about 5000 people in size.. we have great support here and we are excited to give to something that has an effect on all of us.. and playing a good ole game of softball is always fun...i want the world to know about all of our kids and how tuff they all are and how tuff the parents are and thats what the tuff hat tourney is all about.. god bless kids with ahus

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Comment by Linda Burke on August 28, 2010 at 11:01pm
All good news - wishing you the best with everything! As soon as anything official is released by Alexion regarding the pediactric trials, we hope to post the info here.

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.
  
• • • • • • • • • • • •
  
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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