The Foundation for Children with Atypical HUS

Uncategorized (48)

Featured Discussions
Jodi Kayler

aHUS Business Cards and Flyer

Business CardsAttached is a template for aHUS Calling Cards (Business Cards) that can be used to help guide others to the Atypical HUS webs…

Started by Jodi KaylerLatest Reply

Joy Lewis O'Brien

Current research & presentations: for patients and healthcare providers

Hello all, I'd like to create a place where current research articles can be posted and sorted by topic. If you encounter a published stud…

Started by Joy Lewis O'BrienLatest Reply

Discussions Replies Latest Activity
Michele Haymes

Anti Factor H Antibodies

Hi Everyone,  I'm a new member in the group - my 5 year old son Jeremy was diagnosed with aHUS in September last year.  In January we were…

Started by Michele Haymes

2 50 minutes ago
Reply by Cheryl Biermann
Frank Reyniers

MUBODINA?

Found this...   http://www.prath.eu/project.htm   Is this something new or just a Eculizumab clone?   there is still hope!   Cheers, Frank  

Started by Frank Reyniers

4 Dec 1, 2011
Reply by Cheryl Biermann
Joy Lewis O'Brien

Current research & presentations: for patients and healthcare providers

Hello all, I'd like to create a place where current research articles can be posted and sorted by topic. If you encounter a published stud…

Started by Joy Lewis O'Brien

50 Nov 7, 2011
Reply by Cheryl Biermann
Elizabeth Farrell

Auto-immune disease association with aHUS?

My question - is there a possibility? I read somewhere that if genetic testing came back negative that auto immune deficiency should be inv…

Started by Elizabeth Farrell

26 Nov 7, 2011
Reply by Joy Lewis O'Brien
Vicki Provan

Combined liver/kidney transplant in adults

I was wondering whether anyone here has any experience of combined liver/kidney transplants in adults with aHUS? I had my first appointment…

Started by Vicki Provan

7 Oct 16, 2011
Reply by Len Woodward
Steve Greene

MCP mutations

Please share any information you have about MCP mutations here -- thank you!

Started by Steve Greene

23 Sep 29, 2011
Reply by Theresa Pereira
Cheryl Biermann

kidney stones

Before we left the hospital, we found that Nathan's urine has a lot of calcium deposits.  For now we will try and keep these from forming s…

Started by Cheryl Biermann

0 Sep 26, 2011
Lannette Yorgason

Not diagnosed

I have been told, by my doctors, that the closest diagnosis they have for what my illness most resembled was aHUS. How can they not know if…

Started by Lannette Yorgason

8 Sep 24, 2011
Reply by Danna Vaughn
Bill Biermann

conference

Thank you to all the participating parents in the Iowa conference, you are a great resource for our group and were wonderful with your enco…

Started by Bill Biermann

2 Sep 14, 2011
Reply by Lannette Yorgason
Janet Punty

Getting help from US experts to out of country (Japan) hospitals

Has anyone had experience with international hospitals?   We are running up against an issue in Japan where they will not package up diagno…

Started by Janet Punty

6 Aug 30, 2011
Reply by Janet Punty

RSS

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 "About aHUS" tab 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.

************************

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.



Badge

Loading…

© 2012   Created by ALPHA MARKETING.   Powered by .

Badges  |  Report an Issue  |  Terms of Service