The Atypical HUS Foundation

June 2009 Blog Posts (25)

Nathan's Story

Long story as short as possible, Nathan's diagnosis came at 11 months of age, he had been sick with a fever, we had labs done but the lab messed them up and didn't let the pediatrician know right away, by the time he sent Nathan to Cardinal Glennon Children's Hospital for labs, Nathan's kidney was working at about 10%. He was so dehydrated it took forever to draw blood for labs and when they found out what he had and that they had to begin transfusions right away, they planned to take him to… Continue

Added by Cheryl Biermann on June 27, 2009 at 1:55am — 6 Comments

Anna and Starlight Foundation and....

We had great week, Anna is been doing very well with her treatments going once a week( plasma exchange). Once a month we get to get out with Starlight Foundation for fun family day.



This time they had for kids to decorate bags and they will choose one winner and that winner and whole family will go to New York. They also will be making kids bags for us to purchase ( we don't want to miss that). Anna also finish designing shoes with Nike company and it will be out in October. We got… Continue

Added by Svetlana Finley on June 26, 2009 at 10:42pm — No Comments

Introduction

I found out in 2007 that I had the Factor H mutation through the University of Iowa, but at 33 I have been asymptomatic all my life. Upon receiving the news, I rushed to get my brother tested (negative) and then my parents. When I found out that my mother had the same mutation, I urged my parents to pull my sister's medical records. She was born in 1979 and died the same year at 8 months old after a severe illness with protracted hospital stay. My parents had always understood and had… Continue

Added by Joy Lewis O'Brien on June 22, 2009 at 7:31pm — 5 Comments

Brody's Story



Our young little family has just begun this nightmare called Atypical HUS. Our beautiful little boy first became sick when he was 11 months old. We were on a trip to Oregon (we live in California) and he began having flu like symptoms. We took him to the local hospital and were advised to go to the next bigger hospital about a half hour away. There they poked Brody about 20 times trying to get IV access before finally sending him by ambulance… Continue

Added by Amy Swarbrick on June 21, 2009 at 1:00am — 7 Comments

chloes story

on march 22 2008 chloes big brother got influenza A and the kids pediatritian started chloe on tamiflu chloe started to vomit after the first dose her doc said to wait till the next day and if she continued to vomit to stop the tamiflu. chloe kept vomiting so we stopped the tamiflu. chloe then on the 25th had a dentist appt and she got sick right after and kept vomiting so when we got into town i took her to the ER her urine looked like someone had dumped coca cola in the toilet the ER doc said… Continue

Added by lisa ann peterson on June 21, 2009 at 12:58am — 5 Comments

the bracelet

so to make a long story short me and my fiance are getting married in august and i have been looking for the right bracelet to wear for the last 6 months and yesterday i get the email about this website and i get on there and see this beautiful bracelet that represents something our family has been fighting and praying and living through its perfect so my bridal shower is coming up and we have asked all of our guests to donate money to the foundation for research for ahus instead of buying us… Continue

Added by lisa ann peterson on June 19, 2009 at 12:34pm — 1 Comment

my little princess

my daughter chloe was diagnosed with ahus and she has a complement factor H mutation we spent two and a half months in the hospital in march 2008. chloe has recived dialysis and plasma pheresis and plasma infusions. she is curently on labatolol, lisinopril,norvasc,iron,epogen,and singulair. she has recieved over 130 infusions over the last year and her disease has relapsed 3 times since diagnosis. she is a fighter and has pretty good kidney function at this time. this disease came out of… Continue

Added by lisa ann peterson on June 19, 2009 at 1:50am — 4 Comments

Ethan Ardoin

Ethan is very busy playing, but he's given me the "go ahead" to tell his story.



Flu-like symptoms appeared when Ethan was 7 months old. His pediatrician sent us directly to OU Children's Hospital after lab values showed critical anemia. Following six weeks in the hospital he was diagnosed with Atypical (ttp) HUS and was sent home on peritoneal dialysis. With a dialysis machine the size of a refrigerator and a 14 hour therapy, we moved his crib into our living room so he could… Continue

Added by Ethan Ardoin on June 18, 2009 at 9:00pm — 4 Comments

Update

I've not as yet been able to really sit with Jessica these past few days and really talk about this site. I've mentioned it to her in passing and being the computer geek she is I know she'll soon be posting all kinds of things once we sit down and really look at this together. So I would say that soon you'll be seeing different things from both of us.



I don't know how to start a forum but I'm most happy to help anyone if I can with dialysis issues. Perhaps once I can sort throug all… Continue

Added by Colette Ann Frysz on June 18, 2009 at 1:04pm — 5 Comments

Aiden's Story

Hi all! Just wanted to share Aiden's story:



Aiden was born in June of 2007 healthy as could be--we were (and ARE) so blessed to have this beautiful baby boy in our lives...we prayed for this child...and now our little miracle was here. The day after receiving his 4 month vaccinations (November 2007)Aiden was clearly ill---I called and took him into his peds office just to be told it was a bad reaction to the VAX--no labs were drawn even though I was very concerned that he'd had… Continue

Added by Christy on June 16, 2009 at 3:30pm — 4 Comments

Coen & Soliris

Thank you for creating such a great site for all the families that deal with Atypical HUS! My son Coen is 6 years old and was diagnosed in 2003 (11mos) with idiopathic Atypical HUS. Over 5 years, he has had multiple mutation tests but has repeatly turned up negative for any mutations including Factor H, I, MCP, ADAMTS13, and antibody to the Factor H.)



Because of Coen's lack of response to plasma, his case has been especially difficult. He has had over 350 plasmapheresis but never had… Continue

Added by Jodi Kayler on June 13, 2009 at 10:58pm — 12 Comments

Searching for Information?

This website is actually what's known as a social network. It is completely searchable (more on that later). This website is an online community in the truest sense, where people can come together to discuss and share and search for information about aHUS. It is our desire that everyone with aHUS will be represented on this website and their story will be told -- either by themselves, their families, or their friends. We want to hear everyone's aHUS story.



Besides the essential… Continue

Added by Steve Greene on June 13, 2009 at 7:34am — No Comments

Who has aHUS?

There are over 300 cases of aHUS in the USA (alone). I only know that because I read it in the Did You Know section of this website. How can we get 100% of all aHUS families represented on this website in photos, videos, and stories?

Added by Steve Greene on June 12, 2009 at 10:52pm — 3 Comments

Multimedia of our story

Hi - here's a link to a follow-up to an article and 3 page spread of pictures our local paper did on Hyde. This is a slideshow and voice recording playing that they taped of me talking and put together that kind of summarizes our story so far.



You just have to click play to see it.



http://www.forsythnews.com/multimedia/archives/17/



They were doing this in conjunction with raising awareness around the fundraiser we did in April benefiting the Foundation for… Continue

Added by Phyllis Ann Talbot on June 12, 2009 at 6:37pm — 2 Comments

Charmed Moments

How important it is to savor the sweetness of life while those moments linger, because they pass so swiftly with the everyday bustle of life! Last night Skyler participated in a beautiful promotion ceremony set in the lush flower garden of his wonderful Montessori school, surrounded by beaming parents, saint-like teachers, and the innocent faces of his classmates. Oh all right- break the bubble for me! You know all too well that sooner or later, someone was going to accidently trip over someone… Continue

Added by Linda Burke on June 12, 2009 at 12:00am — 4 Comments

Clint

Clint was diagnosed with Atypical HUS at the age of 4. He is now 11 years old and about to enter 6th grade. His Dad, Roger,has AHUS as well- except Roger had a kidney transplant 18 years ago, and is now dealing with the problem of aging with an old transplant. Roger will be 50 in the end of this month (got his AARP card last night!).



Both Clint and Roger have the MCP gene defect and they live relatively normal lives. Clint was sick for a month in September 2002 and has not been sick… Continue

Added by Meg on June 10, 2009 at 2:33pm — 4 Comments

PD question

Hi all - this is kind of a silly practical question. Our son Hyde has been on PD for about a year and he's doing well so far (knock on wood). He's also a crazy active little boy who turns 3 in July. So far he still fits in oncesie or one piece type clothes (thank goodness for Gymboree who makes them up to 3T). Anyway - he's about at the end of the rope on still fitting into these - so wanted to see if anyone had any advice on keeping his site clean and tight? The one piece stuff is so great for… Continue

Added by Phyllis Ann Talbot on June 10, 2009 at 9:51am — 4 Comments

Hello All

Hello to All of you who know first hand the devastation of Atypical HUS. I have turned a milestone of sorts this year. My daughter Jessica was diagnosed with atypical HUS at the age of 11 months in 1989. She has turned 21 this past February. The milestone that we recently turned was that Jessica has just started dialysis at an adult unit. I'm hoping that things will continue to be fine. She has been dialyzing for twenty years. I know that she is a miracle. This year we are beginning another… Continue

Added by Colette Ann Frysz on June 10, 2009 at 9:19am — 2 Comments

Remembering Hunter

Today Skyler was welcomed by our local elementary school staff for the basic screening it gives to incoming Kindergarten students. Hard to believe- Skyler will be 5 years old on June 28th and already lost his first baby tooth last week. Skyler's answer stunned me when a staff person asked his favorite color- she was offerering to hand Skyler that color crayon so he could write his name on the cute name tag provided by the school. "My brother Hunter who used to live with us but died liked Fire… Continue

Added by Linda Burke on June 9, 2009 at 10:13pm — 4 Comments

Our Daugther Anna

Hi everyone

I love this website ;-)

I have daughter Anna who has Atypical HUS. She just turn 11yr.old and finally we getting plasmepherisis once a week. Next month will be a year since she is been with out brake from her treatments. First time she got when she was 4yr. old and she got a lots of blood transfusions and after about a month she got one plasma transfusion and been very healthy girl for 5yr. doing her favorite sport Gymnastics, She got relapse when she was 9 and got only a… Continue

Added by Svetlana Finley on June 9, 2009 at 1:03pm — 1 Comment

Monthly Archives

2017

2016

2015

2014

2013

2012

2011

2010

2009

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

Badge

Loading…

© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service