The Atypical HUS Foundation

March 2014 Blog Posts (5)

blood in stool

Cole has been feeling great...I still have not received a phone call about his Wednesday labs yet...But last night he had some blood in his stool. I called the doctor and she said not to worry just get him on a probiotic and some laxative and call if it continues...he has always had trouble going regularly. ....But why was there blood in his stool..has anyone else had this problem

Added by Alison Montes on March 31, 2014 at 10:32pm — 6 Comments

CANADIAN aHUS Mtg on April 26th

Announcing the 2nd Annual Meeting of aHUS Canada

aHUS Canada Meeting

Saturday, April 26, 2014

Novotel North York Hotel, North York, Ontario

8…

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Added by Linda Burke on March 29, 2014 at 12:00am — No Comments

Back to school

Cole went back to school today for the first time since he was diagnosed.He had his second Soliris infusion on Wednesday and he is feeling great we havent gotten labs back yet but doctors oked him to go back to school. We had a conference beforehand with the principal and teachers so everyone has a gameplan and knows what to look for. I was a nervous wreck he is in Kindergarten and this morning I dropped him off armed with only a water bottle and his backpapck, but he had a great day the…

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Added by Alison Montes on March 28, 2014 at 5:46pm — 2 Comments

Stomach ache

Hi,

Just a little recap on our daughter Devon.  She is 10 years-old and was diagnosed two years ago.  After an incredibly difficult first few month, she has been the picture of health.  The only thing that slows her down, is an occasional stomach ache.  This past month, they have been on a more regular basis and the past 72 hours have been awful for her.  

I've seen many posts, and have read that is very common for our aHUS patients.  Do we know why this happens or has…

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Added by Diane schaller on March 26, 2014 at 12:08pm — 5 Comments

aHUS Diagnosis and Treatment Access

     If you’ve been checking aHUS issues in the news, you realize that there’s a wide difference in aHUS diagnosis, treatment, and access to Soliris in different parts of the world.  Some nations have aHUS patient groups (like the fab aHUSUK group) who are strong advocates for increased drug access and health care reimbursement in their country.  Families and patients in other nations (like strong newcomers aPSGA in Australia) voice their objections…

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Added by Linda Burke on March 12, 2014 at 3:30pm — No Comments

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WELCOME - JOIN US!

The Atypical HUS Foundation 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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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 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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