The Atypical HUS Foundation

May 2012 Blog Posts (8)

Memorial Day Weekend

I hope everyone has a wonderful Memorial Day weekend.  This is Bill and I's anniversary week too, so we will be visiting our family members who have moved on to much greener pastures, heaven.  It has been 16 years  since we lost our oldest son, Billy to a car accident when he was 9.  The anniversaries of his birth and death are, of course, really hard on the whole family, but Memorial Day weekend isn't so bad, because we get to celebrate the lives of many.  May you all be blessed with the…


Added by Cheryl Biermann on May 25, 2012 at 2:09pm — 2 Comments

I am doing just fine :D

Hello to all the aHUS families out there!

I know it's been a LONG time since I have been on here, but I have been very, VERY busy. I was hired as a Veterinary Technician at a veterinary clinic in Amherst NY on March 17th :) I am doing well, still getting the hang of things, and I am improving with each passing day.  I have become a part of the veterinary team, very quickly, despite my medical situation and my height; they don't judge me in that way. They have been willing to train me…


Added by Jessica Olivia Frysz on May 21, 2012 at 2:14pm — 2 Comments

Anna and Soliris

Anna just finished her 4th week Soliris treatment. She is been doing very well, less complains about headaches or any kinda pains (back, knee, tummy) and NO blood and protein in her urine. We start Soliris with her labs been good except her urine and we are glad even for this little thing that we don't need to worry. She will continue to get Soliris for about 6 mo. then we will make decision what will be our next step.

Added by Svetlana Finley on May 18, 2012 at 11:44am — 2 Comments

Stomach aches

Our 8 year old daughter Devon was recently diagnosed with aHUS on March 5, 2012. She spent 5 weeks at CHOC hospital in Orange County CA. It was an incredibly difficult time as you all could imagine. We feel very blessed that she was diagnosed within the first 24 hour and were/are thrilled with the nephrology and hematology teams.  We are still waiting for blood test results to come back from Iowa.  They originally told us it would take 6-8 weeks now they are telling us 3-4 months. Does it… Continue

Added by Diane schaller on May 12, 2012 at 1:42pm — 8 Comments

Jack update

It's been a while!

Jack has been doing great - just finished his freshman year of college, is working part time, and best of all, back to playing b-ball with his friends:)

One glitch... His labs have shown increased levels of renin and aldosterone and he has new onset proteinuria. So, his doctor has decided that his native kidneys need to be removed. We kind of knew this was coming. Next week, Jack is scheduled for laparoscopic bilateral native nephrectomies. He'll be inpatient… Continue

Added by Dana M Simone on May 8, 2012 at 5:57pm — 5 Comments

trying out the andriod, i'm not good with it as i actually know how to type and the one finger typing is annoying! so we had nathan's kidney biopsied.  we were tickled to find out we could stay in g…

trying out the andriod, i'm not good with it as i actually know how to type and the one finger typing is annoying!

so we had nathan's kidney biopsied.  we were tickled to find out we could stay in general care as this is the section of the hospital built in this century!  a real bed not a chair and dvd player, not vhs, but of course we watched almost non stop river monsters.  the biopsy went fine, butnit was a good thing to have an anthesiologist and not just sedation as he…


Added by Cheryl Biermann on May 4, 2012 at 10:22pm — 3 Comments

Tummy Troubles

Brody had chronic diarrhea for a couple months now. It was to the point that the poor kid was having accidents in his pants at least once a day. He just turned four by the way and has been potty trained for awhile now. We had been to the doctor a couple times and did all the necessary blood tests related to any food allergies ect. Everything came back fine but we took him off dairy just in case. Several weeks went by and no improvement. The doctor's suggestion was to make a "diary" of when…


Added by Amy Swarbrick on May 1, 2012 at 11:25pm — 3 Comments

Update on scopes and other fun stuff

Just realized that I havne't posted here in FOREVER!  Can't remember if I even put on here that Hyde was having a colonoscopy and Endoscopy a week or 2 ago?  Anyway - it was a result of on-going diarrhea after his virus back in January that landed us in the hospital for a week - here's the latest below.

Hi - quick update - first off Hyde survived his colonoscopy and endoscopy - he didn't have a ton of fun but at least it's over. The initial…


Added by Phyllis Ann Talbot on May 1, 2012 at 9:23am — No Comments

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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.

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!
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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.
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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 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

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

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