The Atypical HUS Foundation

19 year old son recently diagnosed with AHUS

My 19 year old college freshman was sick with what we thought was a stomach virus when he went to his local hospital for dehydration. After blood tests revealed acute kidney failure as well as cardiac distress, he was moved to ICU. We had him transferred to a larger hospital. The doctors suspected HUS but were unsure if it was aHUS. We immediately began plasma exchange and dialysis. After two weeks of waiting our genetic test results showed aHUS. Our doctor recommended a transfer to Children's Hospital of Atlanta - Egleston where he could be treated by doctors with more experience using Soliris. After spending almost a week in Egleston, we were discharged. My son Will has received two Soliris infusions, but is still on dialysis three days a week. The initial report from his kidney biopsy showed that his kidneys should be able to recover. Praise the Lord! We are now just waiting patiently for his kidney function to return. We are simply taking it one day at a time. I am so thankful that we have this support group! 

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Comment by Kerry Waters on April 28, 2014 at 3:05pm

Since Will's diagnosis with aHUS, I have learned much about the disease. We are so fortunate to say that after five Soliris infusions, Will's kidney function has drastically improved. At the first of April his creatinine was as high as 10.4. Last week we were down to 2.4, and our doctor thinks he can come off of dialysis. Thank God! Of course, now we have to do more lab work and arrange for the removal of the permacath, but at least we could finally come home to rural south Georgia. It is amazing to me how many of you have had to go through so much . . . young babies being diagnosed, dialysis for years, no Soliris, transplants, etc. . . . I know that Will's journey through diagnosis and treatment has been paved by those of you who have battled this disease for years. Thank you for your commitment to finding answers! We know that this battle isn't over, but we know what we are dealing with because of all of you. Thank you for sharing your stories and for being so supportive. We hope to be able to attend the Regional aHUS meeting in Nashville to meet more of you in the future. Thank you and may God bless each of you!

Comment by Linda Burke on April 12, 2014 at 9:46pm

WhoooHoooo!  Such good news!  Keep in mind that our 'Doc to Doc Directory' means that ALL physicians treating aHUS have immediate access to world class consultations via email and phone .....and it's free!

Our wonderful volunteer docs are clinicians and researchers who help fellow physicians diagnose aHUS and can be consulted with any complexities that arise.  Viewable on our site's Home Page, it's also available within the tab 'aHUS for Clinicians' so that you can print it out for Will's medical team - just in case, it's a great thing to have in his medical records for future references.

Comment by Cheryl Biermann on April 7, 2014 at 10:18am

PS sorry, about errors, it is almost impossible to do corrections on my device.  I tend to fly through my responses, then think about corrections.  The content is reliable, though:)

Comment by Cheryl Biermann on April 7, 2014 at 10:16am

Hats off to the medical staff in quickly diagnosing this disease, sometimes they tend to take a long time to get around to thinking of aHUS.  Yes, many of our patients have come off dialysis when disagnosed and treated so quickly with Soliris.  please yet your son know we have an adult forum for aHUS patients too, some of the patients are young adults like him and would relate very well to school, work and treatment concerns.  The men in the groups tend to be quieter, however, maybe if your son would post something one of the other men would respind.  I am just thankful doctors are taking less time thinking of HUS and aHUS in patients they see!  It means word is getting out and that is good for newpatients.

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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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