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 —
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 —
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 —
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 —
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 —
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 —
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 —
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.
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 —
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 —
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 —
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 —
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 —
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 —
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 —
Our son Jonathan was born on September 16, 1992. This was the most wonderful day of our lives. He was a healthy baby, no problems at all, he was beautiful. For the first 8 months of his life, he was your typical baby, ate well, laughed, and as far as we were concerned, he was advanced. There was something very special about our son, and we were soon to find out.
On a Sunday in June, 1993, we took Jonathan to a church carnival. It was a very hot day; Jonathan was a little out of… Continue
Added by Donna Kolp on June 8, 2009 at 4:03pm —
I am 34 yrs old. I had a renal transplant on November 23, 2004. I lost my kidneys after the birth of my 3rd baby girl. I was diagnosed with postpardum HUS/TTP. My nephew Ryan Still has been struggling with atypiacal HUS for many years now. I have all the same mutations as Ryan. My transplant has been successful for almost 5 years now. My hope is that when Ryan gets to the point that I am at, that he has as much luck as I have had with my transplant. If anyone has any questions about… Continue
Added by Desiree L Mayne on June 8, 2009 at 2:21pm —
Ryan woke up and said he's dizzy and has a headache. I'm hoping it's just the Monday blues and he was coming up with excuses to not go to school. He has an infusion scheduled for this afternoon, so I will have his lab's to see if there is anything funky going on.
Added by Heather Still on June 8, 2009 at 10:23am —
As a mother to two sweet boys diagnosed with aHUS, I've been so blessed to have wonderful family, friends, and medical personnel offer support and encouragement as we've struggled to understand and to cope with this rare disease. Hunter was diagnosed at 10 months of age and was in continual treatment until his death in May of 2008 at 5 and a half years old. Hunter was a clever and handsome boy whose zest for life usually meant he was in constant motion- preferably outdoors! Our wonderful team… Continue
Added by Linda Burke on June 4, 2009 at 11:23pm —
We welcome you to a website dedicated to sharing information about aHUS and to working toward the challenge of funding research for this rare disease. We'll leave the medical explanations of atypical hemolytic uremic syndrome (aHUS) to sites best geared to the experts in nephrology and hematology. It is our hope that as families and individuals affected by aHUS share their stories, their courageous journeys will provide inspiration, answers, and guideposts for others.
Added by Linda Burke on June 3, 2009 at 10:40pm —
Our team at ALPHA was very fortunate to be able to create this social network for the families and communities dealing with atypical HUS. We hope you all find it a useful place to share, get advice and support, increase awareness, and raise money to help these families.
If you or someone you know is looking for help setting up their own social network, please let us know. We would love to help.
Added by ALPHA MARKETING on May 9, 2009 at 11:30am —