The Atypical HUS Foundation

Jen Garceau
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  • Fairfield, VT
  • United States
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Latest Activity

Jen Garceau replied to Betsy Pennington's discussion Low Hemoglobin
"I also have low hemoglobin. In my case, if it falls below a 10.0, then I can get an Aransep shot. With chronic kidney disease, your kidneys are functioning properly and one of the kidneys jobs is to send out a hormone that stimulates red blood cell…"
Aug 22, 2016
Jen Garceau and Dana M Simone are now friends
Aug 22, 2016
Jen Garceau commented on Kerry Waters's blog post Issues with Soliris Infusion through Home Health Care
"I am in the process of getting home infusions as well but my hold up is my local Home Health Agency dragging their feet. I receive Soliris weekly and have a 45 minute drive (not even close to yours) and I'm over it. It's an all day affair…"
May 14, 2014
Jen Garceau replied to Jill Ziegler's discussion Adults with AHUS
"Here's my story.... I was diagnosed with aHUS in November 2012, 8 weeks after having my 3rd child. I was hospitalized for about 20 days and was on plasmapheresis for most of that time. My kidneys went into end-stage renal failure and I was also…"
Jan 10, 2014
Jen Garceau updated their profile
Jan 10, 2014
Cheryl Biermann left a comment for Jen Garceau
"Welcome, Jen.  Let us know if you need any help navigating the site, otherwise, feel free to add your story or comments on the blogs and forums.  "
Dec 21, 2013
Linda Burke left a comment for Jen Garceau
"Welcome, Jen! We hope that you check out the tab 'Adults with aHUS' as a starting point to connect with other aHUS adults.  Looking forward to your comments and posts..."
Dec 20, 2013
Jen Garceau is now a member of The Atypical HUS Foundation
Dec 20, 2013

Profile Information

August 15
Do you have a friend or family member diagnosed with aHUS?
I am an adult aHUS patient.
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
My membership request involves business interests as I seek additional aHUS information for business applications.
My child ( or myself as a patient) is best described as:
Tested but Awaiting Results

Comment Wall (2 comments)

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Join The Atypical HUS Foundation

At 9:54pm on December 21, 2013, Cheryl Biermann said…

Welcome, Jen.  Let us know if you need any help navigating the site, otherwise, feel free to add your story or comments on the blogs and forums.


At 9:20pm on December 20, 2013, Linda Burke said…

Welcome, Jen!

We hope that you check out the tab 'Adults with aHUS' as a starting point to connect with other aHUS adults.  Looking forward to your comments and posts...



To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from

The Atypical HUS Foundation 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

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


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!
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 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

For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email



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