The Foundation for Children with Atypical HUS

Our daughter Lily, age 11, was just diagnosed with aHUS in February 2014.  After 2 bouts of the flu which were her trigger, she suffered total kidney failure in February 2013, leaving her in a coma for a week and on on round-the-clock dialysis for two weeks.  She spent a full month in the hospital and 3 months on dialysis 3 a week. She has been on 7-8 daily blood pressure medications since then and her doctor made the final diagnosis of aHUS (based on clinical observation, no genetic confirmation yet) just a few months ago. Lily started on Soliris on March 20 and we look forward to good results.

We attended a NORD Conference in Jersey City this past weekend and found it a very enlightening experience and very supportive environment of other families who are dealing with this same very serious and life-changing illness..

We look forward to participating in the community here.

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Comment by Denise Schmidt on July 13, 2014 at 6:30pm

Chris, I'm from Limerick PA. Not far from you.  My daughter was diagnosed 2 years ago.  She is now 25.  Good news is that she was on Soliris for 9 months and her kidneys recovered enough that she was able to stop dialysis.  I hope Lily has the same kind of success.  Anyway, we're close by if you need anything or have questions. 

Comment by Marilyn Cline on July 3, 2014 at 5:12pm
I hope and pray Lily gets better with the Soliris. It saved my life.
Comment by Kerry Waters on June 8, 2014 at 11:32am

Chris,

My nineteen year old son was diagnosed with aHUS in March. Your experience sounds scarier than ours! I can tell you that after several scary months of waiting on lab results, kidney function to return, and Soliris to work, my son is doing much better. Right now his biggest concern is the thinning of his h'air! Please keep us posted on Lily's progress! All I can say, is we are fortunate that our children are experiencing this horrible disease in 2014 unlike several of the other parents who traveled this journey prior to FDA approval of Soliris! Best wishes to you!

Comment by Cheryl Biermann on June 6, 2014 at 11:05pm
Chris, I am sorry you are living this nightmare, but welcome.
Comment by Cheryl Biermann on June 6, 2014 at 10:58pm
Thanks again Dana for representing the foundation. Welcome to all our newbies, hopefully we'll all meet in Iowa!
Comment by Dana M Simone on June 4, 2014 at 9:28pm
Chris - it was great to meet your family at the NORD event. We were so impressed with Lily's confidence in taking the mic to introduce herself, and with her great attitude. So happy you've joined the Foundation - please keep us up to date on Lily's progress.

IN REGARD TO MEMBERSHIP REQUESTS

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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 to patients, family, friends, caregivers research 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.
  
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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...

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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