The Foundation for Children with Atypical HUS

Hey everybody,

Been awhile since I've updated on my Brody man so I thought I would just leave a short note and a hello. Sorry Phyllis to break your blog run:)

We saw Brody's nephrologist today, things are looking good for Brody's kidneys. Dr. thinks they have recovered 100% from his occurance almost a year ago (March 6). Brody has been sick with colds or viruses on and off for the last couple of months thanks to his big sissy who started preschool this year. He seems to be holding stable though and has not had an infusion since August. His Haptoglobin dropped (still in normal range but getting close to low range) the time before last but has come back up. So we will recheck next week to make sure everythings still good. They were hoping it was just because he was sick when he had the labs done.....well see. As we all know we can't ever get "to comfortable" with things being normal. Just can pray for the best and try to live as normal as a life as possible.

Anyway I hope all is well with your families and your amazing children. God bless

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Comment by Grace on March 9, 2010 at 7:45am
Hooray for passing the one year mark with flying colors!
Comment by Linda Burke on March 5, 2010 at 2:54pm
Whoo Hoooo- sending every best wish for a looong stretch of fun and carefree frolic for y'all!
Comment by Heather Still on March 5, 2010 at 2:08pm
Great news Amy!!! Keep up the good reports.
Comment by Cheryl Biermann on March 5, 2010 at 11:43am
how nice Amy...I guess that means you'll be sending us more little cute Brody and baby chick pictures for Easter, I hope?
Comment by Svetlana Finley on March 5, 2010 at 9:40am
Awesome news, Amy!!! Anna has her line out ;-)
Comment by Phyllis Ann Talbot on March 5, 2010 at 7:46am
That's such great news Amy!! (and I'm glad you broke my 'streak' was feeling like a page hog ;-).

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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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
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