The Atypical HUS Foundation

Phyllis Ann Talbot
  • Female
  • Cumming, GA
  • United States
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Phyllis Ann Talbot's Discussions

Dialysis
25 Replies

Started this discussion. Last reply by Cheryl Biermann Aug 1, 2011.

 

Phyllis Ann Talbot's Page

Profile Information

Birthday
September 6
Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My child ( or myself as a patient) is best described as:
Factor H (CFH) Protein(Gene)
My name is Phyllis Talbot and I am the mother of an adorable 2 1/2 year old little boy named Hyde who is struggling with a very rare disease called Atypical HUS. This journey began for us in January of 2008 and Hyde is currently on peritoneal dialysis every night at home for 10 hours. He is considered at end stage renal disease and his kidneys are permanently damaged. We have suffered with severe anemia, high blood pressure, low platelets, as well as bouts of respiratory failure and a seizure over the last 18 months. Hyde is currently stable and actually feeling good and acting like a normal 2 1/2 year-old.

Here's a link to an article the local paper did on Hyde:
http://www.forsythnews.com/news/archive/2450/

Also - here's a link to the webpage we set up:
www.hike4hyde.com

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Phyllis Ann Talbot's Blog

Amazing time in Atlanta this weekend

I had such a great time at the Atlanta Meet up this past weekend!  Got to meet new friends and reconnect with old ones.  It's always so great to hear all the different stories and be impressed once again with how great of a community we have!  Loved hearing Dr. Swinford's medical talk - each doctor explains things just a little bit differently and I learn something new every time.  It was also very cool to hear our very own case manager Kim Chiarella represent One Source and so great to put…

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Posted on November 16, 2015 at 2:38pm

November 14th in Atlanta!!!!

Who am I going to get to see in Atlanta in a few weeks?  Excited to see new folks and old friends at the Atlanta meet up?  Make sure to sign up today!  Also excited to hear a new medical perspective - every doctor explains things just a little differently and a little more sinks into my skull each time! 

Cant wait to see you all!

https://globalgenes.org/ahus-registration/

Posted on October 19, 2015 at 5:48pm

Exciting leadership announcement!

The Atypical HUS Foundation couldn't be more excited to announce 2 new board members coming on 'board' effective July 1, 2015!  Let us first say how impressed and blessed we are with the quality and quantity of great candidates - what an embarrassment of riches!  We truly feel like this is just a first step towards expanding our leadership pool and opportunities as the Foundation moves into a…

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Posted on May 5, 2015 at 10:06am — 2 Comments

Back to reality - thanks to everyone for coming!!!

Hi everyone - just wanted to reiterate how much we appreciate all of you making the huge effort to travel to the University of Iowa this past weekend for the Conference!  I can't tell you how much I enjoyed getting to meet as many of you as I could and hate that I know I missed some folks - you'll just have to come back!  Again - thanks so much and we hope you felt like it was well worth your time to make the trip with all the info provided.  As Linda said - join this webpage and let your…

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Posted on October 27, 2014 at 1:00pm — 2 Comments

Another commercial for Iowa! Sign up today!

Hi everyone - another quick commercial for Iowa!  Use the link below to reserve your room (Covered by the foundation for both Friday, Oct 24, and Sat, Oct 25)!

https://www.starwoodmeeting.com/StarGroupsWeb/res?id=1406189080&key=8E04DC3

And use the following link to register with Amy Weaver at the University of Iowa for the actual conference:…

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Posted on July 30, 2014 at 4:30pm

Comment Wall (31 comments)

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

Join The Atypical HUS Foundation

At 8:19am on October 29, 2014, Jeff Schmidt said…

I thought I was already signed up but Linda Burke told Denise that I wasn't.  So here I am!

At 1:53pm on March 21, 2012, Aida Billingsley said…

Hi Phyllis, just wanted to thank you for your input. I hope you are all doing well! 

At 10:29am on November 13, 2011, Joy Lewis O'Brien said…

Thanks, Phyllis! I will definitely look for the full articles in about a month or so. I appreciate the notice!

At 11:33pm on March 16, 2011, Linda Burke said…

Hi Phyllis,

Hope that Hyde is at home now and comfortable after the stent removal - said some prayers that all would go smoothly....

At 2:52pm on January 6, 2011, Jill Ziegler said…

Hi!

Thanks for your compliments. I am so sorry to hear your little one is dealing with all of this. Hopefully a transplant will come sooner rather than later for him. I am praying this will be the year for me. I will be transplanted at the Univ of Iowa whenever it happens. They are a superb team!!!! Thanks for reaching out to me and I look forward to staying in touch. Are you on facebook?

xoxo

Jill

At 11:17am on December 29, 2010, Cheryl Biermann said…
Oh, no, was Hyde sick?  Hope he felt well enough to enjoy Christmas?
At 11:22pm on December 27, 2010, Linda Burke said…
Hope to hear that Hyde is on the mend soon !
At 2:20pm on August 25, 2010, Joy Lewis O'Brien said…
Thank you, Phyllis! It will be interesting as we plan a ceremony and then a separate reception here in MA and one in TX (where my family lives). I foresee lots of cake in my future!
At 8:27am on July 1, 2010, Deborah Deffenbaugh said…
Hi Phyllis--Sorry I took so long to respond to your friend request. I don't visit my home page often as I ususally go right to the research blogs and discussions. How is everything going with Hyde? Alyssa is still on track for a transplant using Soliris this summer but it seems as if we keep running into snags. We wanted to do it in Iowa but our donor won't fly and can't drive for at least 2 weeks. She understandably doesn't want to be away from home that long so we switched to Univ. of Rochester, which is a huge teaching hospital in our area. We can't use the Dr. we have had since the beginning as he doesn't have privileges there. So now we feel like we are starting over with the learning curve---Ugh!!!
At 1:47pm on June 24, 2010, Abrahim Saleh said…
Hi Phyllis! I can't believe you are that close to my sister! All along she has felt alone that there was very little hope, but with other parents like herself w children plagued by aHus, she will feel a sense of hope when she hears about it. I have been trying to get her to become a member. Soon she will be able to share Abraham's story with everyone. Thanks again for commenting and welcoming us as members.
 
 
 

IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

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 info@atypicalhus.org

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

WELCOME - JOIN US!

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.


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.

************************

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 info@atypicalhus.org 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 www.atypicalhus.org.


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 info@atypicalhus.org

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