The Atypical HUS Foundation

Kerry Waters
  • Female
  • Glennville, GA
  • United States
Share on Facebook Share

Kerry Waters's Friends

  • Rebecca D. Hart
  • Marilyn Cline
  • Heather Hunter
  • Melissa Hearn
  • Cheryl Biermann

Kerry Waters's Discussions

Need some assistance from others
2 Replies

I am dealing with an insurance company that has denied access to a Critical Care claim because Will, our son with aHUS, is no longer needing dialysis. He has responded well to Soliris treatment. We…Continue

Started this discussion. Last reply by Kerry Waters Jan 11, 2015.

aHUS Regional Meetings
1 Reply

Since we are "new" to aHUS, we didn't have a clue where to begin when our son was diagnosed. From the beginning, my best friend said "Let's just pray that it's HUS not aHUS." When the results came…Continue

Started this discussion. Last reply by Cheryl Biermann Jul 23, 2014.

aHUS college student - accommodations
5 Replies

As my son returns to college this fall, I have lots of questions. We have attended a meeting with at the Student Disability Center to sign a waiver for him to receive accommodations. He said he needs…Continue

Started this discussion. Last reply by Kerry Waters Jun 12, 2015.


Kerry Waters's Page

Latest Activity

Linda Burke left a comment for Kerry Waters
"Hi Kerry, Thanks for your warm welcome to Donnan - it's much appreciated.  Hope things are going well for you and your family."
Apr 14
Kerry Waters left a comment for Donnan Oyler
"Hello! I am a mother of a 22  year old son who was diagnosed with aHUS at age 19. We live in south Georgia not too far from Statesboro, GA. I wanted you to know that I am here to help with any questions and/or concerns you have. It is easiest…"
Apr 14
Rebecca D. Hart and Kerry Waters are now friends
Sep 10, 2016
Kerry Waters is attending Linda Burke's event

aHUS Mtgs. - Sept to Dec 2015 at Various

September 18, 2015 at 6pm to December 5, 2015 at 4pm
NORD and Global Genes are hosting aHUS regional meetings.   Hear a presentation by an aHUS medical expert, capture this chance to ask a physician your aHUS questions, connect with other aHUS patients and their families – and MORE!These events are free, and include one night's hotel accomodations, event meals, and a travel stipend.    OCT. 16-17th Anaheim, CA – Hosted by NORD …See More
Sep 27, 2015
Kerry Waters replied to Kerry Waters's discussion aHUS college student - accommodations
"Megan, Thanks so much for your reply! Will was able to schedule his classes around infusions so that was a tremendous help! He has completed two semesters since his aHUS diagnosis and managed to work part-time (15 - 20 hours a week). He didn't…"
Jun 12, 2015
Megan Russo replied to Kerry Waters's discussion aHUS college student - accommodations
"Hi Kerry, I know that by now you have surely successfully managed college with aHUS, but I figured I'd share anyway. I was diagnosed over the summer which was honestly (though hard with work) the best time it could have happened because I…"
May 25, 2015
Kerry Waters commented on Megan Russo's blog post My Journey with aHUS
"Megan, As I read your story, I was tearing up! This is just too familiar to my family. My son was a freshman in college when he was diagnosed at age 19. Like you, we were told that it was TTP. Like you, we thought aHUS was a death sentence. Like…"
Jan 11, 2015
Kerry Waters replied to Kerry Waters's discussion Need some assistance from others
"Cheryl, Thanks for your reply. Whether I'm on this website or the Facebook page, aHUS families, I always get great advice! I have emailed my One Source Case Care Manager with my concerns. This insurance denial is a separate one from our…"
Jan 11, 2015
Cheryl Biermann replied to Kerry Waters's discussion Need some assistance from others
"Hi Kerry, Our docs always handled these letters for us through our social worker.  We were denied coverage for Rena Cal a feeding suppliment that our insurance denied.  In our case, our son had medical anorexia, literally never ate.…"
Jan 11, 2015
Kerry Waters and Marilyn Cline are now friends
Dec 27, 2014
Kerry Waters posted a discussion

Need some assistance from others

I am dealing with an insurance company that has denied access to a Critical Care claim because Will, our son with aHUS, is no longer needing dialysis. He has responded well to Soliris treatment. We are very thankful that he does not have ESRD, but we also could use that critical care claim to help pay the numerous medical bills. I just don't understand how they can pay a benefit to a person who has a heart attack and has a stent put in, but not pay a benefit to a person who would have died had…See More
Dec 11, 2014
Cheryl Biermann replied to Kerry Waters's discussion aHUS Regional Meetings
"It was a very wonderful report you posted here, as much time and devotion Linda Burke has spent setting up these meet ups with NORD and Global Genes, I am happy she gets this nice commentary.  I shouldn't leave out Phyllis Talbot either!…"
Jul 23, 2014
Kerry Waters commented on Marilyn Cline's blog post My story
"Hi, Marilyn! I am so glad you are responding well to treatments. Since Will was diagnosed in March, we are just getting used to living with this disease. This week he had a sore throat and head cold. The PA thinks he just has a cold. I agree, but it…"
Jul 18, 2014
Kerry Waters posted a discussion

aHUS Regional Meetings

Since we are "new" to aHUS, we didn't have a clue where to begin when our son was diagnosed. From the beginning, my best friend said "Let's just pray that it's HUS not aHUS." When the results came back that our son had aHUS, your website provided us with all of the information we needed on the disease. I think our doctor even went to your website where he found the Macheon Diagnostics aHUS panel testing that became available the same month we were diagnosed. Anyway, I debated on attending a…See More
Jul 9, 2014
Kerry Waters replied to Kerry Waters's discussion aHUS college student - accommodations
"Thanks Grace! I met with the doctor at GSU Health Services yesterday. I was impressed because he actually did his "homework" before I arrived. I didn't have to do a lot of explaining about aHUS! He was very supportive. He even gave me…"
Jul 9, 2014
Kerry Waters is attending Linda Burke's event

Oct. 24-26th, 2014 - aHUS Conference at the U of Iowa at University of Iowa, Carver Medical School

October 24, 2014 at 4:30pm to October 26, 2014 at 10:30am
The University of Iowa and the Foundation for Children with Atypical HUS announce the 2014 aHUS Family Conference to be held at the University of Iowa on October 24-26, 2014.JOIN US for the only aHUS conference in the United States to offer multiple medical presentations from 6 aHUS experts and covering high-interest  topics such as mutations, disease pathology, the complement cascade, transplant issues and MORE! Click here to …See More
Jul 6, 2014

Profile Information

September 5
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?
I have attended a meeting or conference to learn about aHUS.
NO - but I'd like to attend a future meeting.
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

Kerry Waters's Blog

Issues with Soliris Infusion through Home Health Care

Hi! I need some advice. My son Will is getting infusions every two weeks in Atlanta. Initially, we thought he would be able to get infusions via home health care, but so far we are having trouble getting companies to agree to the terms. I have been talking with a case manager at Soliris and a representative from Egleston Children's Hospital. We keep hitting a dead end. Do all of you have to travel long distances to be able to receive your infusions. We have a four hour drive to our…


Posted on May 13, 2014 at 10:47pm — 4 Comments

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…


Posted on April 6, 2014 at 10:30pm — 4 Comments

Comment Wall (5 comments)

You need to be a member of The Atypical HUS Foundation to add comments!

Join The Atypical HUS Foundation

At 9:29am on April 14, 2017, Linda Burke said…

Hi Kerry,

Thanks for your warm welcome to Donnan - it's much appreciated.  Hope things are going well for you and your family.

At 8:19pm on March 31, 2014, Cheryl Biermann said…

Kerry, welcome.  As you can see, you are in good hands at CHOA...and here as well.  We look forward to getti g to know you.

At 9:35am on March 31, 2014, Phyllis Ann Talbot said…

Kerry - same here - sent you a note on Facebook as well - just yell if you want to talk - I'll actually be at Egleston with Hyde Thursday morning for clinic if that's where ya'll are - happy to stop by and say hey!

At 8:14am on March 31, 2014, Melissa Hearn said…
Hi Kerry,
Sorry to hear about your son. My son also has AHUS and we are currently in Atlanta. We are moving at the end of the school year.

I also work for CHOA in the non clinical setting. What hospital are you at? Please message me of there's anything you need. I would be happy to visit or call if you want to talk, have questions, etc.

Melissa Hearn
At 11:01am on March 30, 2014, Linda Burke said…

Welcome to the website, I'm so sorry to hear that your son had his aHUS arise while at college but am glad to learn that Soliris therapy will begin soon.  CHOA is a great place, and our Director Phyllis Talbot is in your area (Children's Hospital of Atlanta - Egleston ).

Please check out the informational videos about the disease (U of Iowa doctors, in particular), the aHUS Bootcamp, and the Soliris forum at  . 

You'll find the tab 'aHUS Materials & Info' lists multiple resources, some which are valuable to share with friends and family who want to understand this rare disease.  We welcome your comments, questions and participation.



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



© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service