The Foundation for Children with Atypical HUS

Forum Discussions (101)

Featured Discussions

ADULTS with aHUS

 Over the past couple of years, new information about atypical HUS has been slowly filtering from the research and clinical arenas into jou…

Started by Linda Burke in UncategorizedLatest Reply

aHUS Complications: Potential Impact for Multiple Organs

The topic of aHUS complications has surfaced in multiple commentary, including our website's Forums and blogs that have referred to potenti…

Started by Linda Burke in UncategorizedLatest Reply

Soliris

Currently an aHUS patient using or considering treatment with Soliris? Please add your voice to this Forum!Many members of this website hav…

Started by Linda Burke in SolirisLatest Reply

Discussions Replies Latest Activity

Complement Factor I

Hi everyone!  I got my genetic testing back and I have an abnormal CFI gene.  The doctors recommend a liver/kidney combo transplant.  I am…

Started by Kristen Bruner in Soliris

1 yesterday
Reply by Phyllis Ann Talbot

Mini Episodes

Have been dealing with this for about a year and a half now and have noticed that there are times when it seems like I get mini episodes or…

Started by Jennifer Christopher in Uncategorized

4 Apr 6
Reply by Jennifer Christopher

Got part of genetic testing back

The part we got back were negative I believe it was the antibody testing. We have been having issues with the school so we are having a 504…

Started by Jennifer Schroeder in Soliris

4 Mar 31
Reply by Cheryl Biermann

Bone pain

Any patient experience severe leg bone pain? Ethan's right leg has been hurting for a few weeks now- chalked up to growing pains by his nep…

Started by Anne Bruns in Soliris

7 Mar 26
Reply by Jennifer Christopher

ADULTS with aHUS

 Over the past couple of years, new information about atypical HUS has been slowly filtering from the research and clinical arenas into jou…

Started by Linda Burke in Uncategorized

119 Mar 9
Reply by Len Woodward

Spent the night at the ER

The other night I came home from work to find a very sick little guy 104 fever took him to the ER and after lots of explaining to several d…

Started by Jennifer Schroeder in Soliris

1 Feb 26
Reply by Cheryl Biermann

Yay.....

Garrett is getting his port on the 5th! He is happy no more sticks. His Bp is on the rise so looks like a change in medicine soon. He is a…

Started by Jennifer Schroeder in Soliris

3 Feb 25
Reply by Cheryl Biermann

Adults with AHUS

I am having a hard time finding people who have responded to comments I have posted. I def want to help anyone (adult or pediatric) with aH…

Started by Jill Ziegler in Soliris

10 Feb 19
Reply by Kristen Bruner

Hypoglycemia issues anyone????

Kasey had a fasting glucose of 37, with no symptoms exhibited. Has anyone else struggled with this??? Thanks, Kris

Started by Kris Carrender in Soliris

0 Feb 17

Just checking in...

How is everyone doing this beautiful Sunday? Garrett is doing well on his Solaris we did have d one issues this last appointment his face i…

Started by Jennifer Schroeder in Soliris

3 Feb 13
Reply by Cheryl Biermann

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IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from Linda@atypicalhus.org.

The Foundation for Children for Children with Atypical HUS is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to Linda@atypicalhus.org

Membership is open patients, family, friends, caregivers and medical personnel.

WELCOME - 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 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 our research efforts of the Foundation for Children with atypical HUS at www.atypicalhus.org and www.atypicalHUS.net


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:

Foundation for Children with Atypical HUS
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 Linda@atypicalhus.org


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