The Atypical HUS Foundation

Debbie Griggs
  • Female
  • Ashburnham, MA
  • United States
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Latest Activity

Debbie Griggs replied to Tricia's discussion To test or not to test?
"One other thought (funny how you always get that after you press the send button). If you did have your children tested, and 1 came back positive, how would that make you feel and would you treat that 1 differently. Maybe that 1 would get better…"
Apr 28, 2016
Debbie Griggs replied to Tricia's discussion To test or not to test?
"My brother was diagnosed late last year and I have a 50% chance of having the same mutation. I've been giving a lot of thought to the question of being tested myself. If it comes back negative, that would be great, but if I had the same…"
Apr 28, 2016
Debbie Griggs commented on Debbie Griggs's photo

IMG-20151013-WA0011 (1)

"Photo shows me (in the middle), my husband on the right and my brother who has aHUS on the left."
Apr 27, 2016
Debbie Griggs is attending Linda Burke's event

aHUS Family Conference - IOWA at U of Iowa campus, and Iowa City Sheraton Hotel

November 4, 2016 at 12pm to November 6, 2016 at 12pm
The Atypical HUS Foundation is pleased to announce that the aHUS Family Conference, in conjunction with The University of Iowa, will be held in Iowa City, Iowa on November 4-6, 2016 at the Sheraton Iowa City Hotel.Usually held every 2 years, the aHUS Family conference is the only aHUS patient-centered meeting with multiple medical presentations by aHUS experts on topics of diagnosis, treatment, genetics, and more. Registration is limited, FMI see details at the Eventbrite registration site: …See More
Apr 26, 2016
Debbie Griggs left a comment for Linda Burke
"Hi Linda, I'll chat to my husband tonight about Iowa, I would very much like to attend so let me get back to you on that! Thank you for the welcome Cheers Deb"
Apr 26, 2016
Debbie Griggs posted a photo
Apr 26, 2016
Linda Burke left a comment for Debbie Griggs
"Welcome, we hope you find this site to be a source of information and support.  Please check out our aHUS informational resources."
Apr 26, 2016
Debbie Griggs is now a member of The Atypical HUS Foundation
Apr 26, 2016

Profile Information

January 21
Do you have a friend or family member diagnosed with aHUS?
Immediate Family
I am a caregiver for an aHUS patient
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.
Personal reasons, my brother has aHUS
My child ( or myself as a patient) is best described as:
Not Tested

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Join The Atypical HUS Foundation

At 4:21pm on April 26, 2016, Linda Burke said…

Welcome, we hope you find this site to be a source of information and support.  Please check out our aHUS informational resources.



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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