The Foundation for Children with Atypical HUS

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Jessica Olivia Frysz Happiness is over

A month ago I had an individaul come to me offering to donate a kidney transplant. Last night at the time of 8:38pm, I get a phone call with a laughing tone on the other end, telling me that he is going back to his ex to get married and that I am not to receive his kidney. This brought my hope level up and now I'm hurt, and have dealt with disappointment long enough. I'm ready to find a donor, or just accept a deceased kidney at this point, to be honest. It seems like as my hope goes up, my c

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Added by Jessica Olivia Frysz on March 9, 2010 at 12:54pm — 3 Comments

sally rakes My beautiful Daughter Destiny

In Nov of 2009 got sick. I thought it was the flu we went to the hospital and she was admitted on the18th to the ICU at St. Frances Children Hospital we were there for 3 weeks they then sent us to OU's Children's hospital. We got there on Dec 9th 2009, and left on Jan 15th 2010. While we were there we were in the ICU twice because of the blood pressures she got as high as 186/132 she had a stroke and lost her vision for awhile (still has some… Continue

Added by sally rakes on March 8, 2010 at 5:53pm — 5 Comments

Phyllis Ann Talbot What a week - and BP meds help

OK - here's the latest carepage update - and hopefully the last one until our next clinic - I do have a question for all of you out there that have had nephrectomy's - one thing I had not been told prior to Hyde's nephrectomy was that a couple of his meds would no longer work since his kidney's were removed (would have been nice to know before - but oh well). They have taken him off his Cozaar and Captopril. Right now he's on Norvasc (amlodipine) and Atenolol (this as
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Added by Phyllis Ann Talbot on March 5, 2010 at 2:48pm — 6 Comments

Svetlana Finley Anna is home and her line is out ;-)

In last two weeks Anna been having problems with her central line untill last weekend it was really started getting more worse. I had to pick up Anna from school on Monday and take her to Doernbecher hospital, for check up and culture of her line. On Tuesday morning Anna went to school and stayed there untill she was done with her school. During lunch time i received call from Anna's doctor telling me that she has STAFF infection and that they need to admit Anna and remove line on next day. I wa… Continue

Added by Svetlana Finley on March 5, 2010 at 9:46am — 5 Comments

Amy Swarbrick Holding Strong

Hey everybody,

Been awhile since I've updated on my Brody man so I thought I would just leave a short note and a hello. Sorry Phyllis to break your blog run:)

We saw Brody's nephrologist today, things are looking good for Brody's kidneys. Dr. thinks they have recovered 100% from his occurance almost a year ago (March 6). Brody has been sick with colds or viruses on and off for the last couple of months thanks to his big sissy who started preschool this year. He seems to be holdi

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Added by Amy Swarbrick on March 5, 2010 at 1:48am — 6 Comments

Phyllis Ann Talbot WE'RE HOME

Yippee!!! We got home a few minutes ago and Hyde's sleeping on the sofa! Sorry i didn't update earlier but we had kind of a rough evening/night/morning with blood pressure, itching, and pain for Hyde - so didn't want to jinx anything until we were on the way home. Hyde didn't get too much sleep last night - think the rash and the surgery finally caught up with him and he was fussing pretty much every 5 min or so but seems better today -

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Added by Phyllis Ann Talbot on March 4, 2010 at 4:09pm — 4 Comments

Phyllis Ann Talbot Not today :-(

OK - sorry to fill up all the blog space here - just now that Heather and a few others were having problems seeing the carepages - hopefully will be home in a day or two and I'll stop filling this space up!!
Here's the post below:

Oh well - guess we got a little overexcited - we really had thought Hyde might be going home today - but no

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Added by Phyllis Ann Talbot on March 3, 2010 at 12:12pm — 3 Comments

Phyllis Ann Talbot Still doing good

Still doing good

Hey everyone - just to let you know - Hyde's still doing really well - he stayed with Bill last night and did well - only my tough little kid would rather deal with the pain of having two organs taken out than to take any medicine he's not used to :-(. He did take some of the 'good' tylenol yesterday midday - and took a long nap and then was able to get up and move around a little

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Added by Phyllis Ann Talbot on March 3, 2010 at 9:23am — No Comments

Phyllis Ann Talbot Hey there everyone - just in case you haven't been able to get on the carepage - Heather mentioned s…

Hey there everyone - just in case you haven't been able to get on the carepage - Heather mentioned she was having some problems - I'm actually breathing a little easier - see latest update below - but basically so far so good! ;-)

Our night and PD!!

Posted 2 minutes ago

Hey there everybody - I'm sure you are all SICK of hearing from us by

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Added by Phyllis Ann Talbot on March 2, 2010 at 9:24am — 4 Comments

Zofia FDA grants Orphan Drug Designation to LFB’s « Complement Factor H »

In December 2009, the Food and Drug Administration (FDA) granted LFB (Laboratoire
français du Fractionnement et des Biotechnologies) with the Orphan Designation for its
Complement Factor H, a human plasma-derived product, currently in pre-clinical
development.
The designated orphan indication is for the "Treatment of atypical Hemolytic Uremic
Syndrome (aHUS) associated with an inherited abnormality of the complement system".
For more information, please visit… Continue

Added by Zofia on February 28, 2010 at 1:30pm — 4 Comments

Phyllis Ann Talbot Nephrectomy a go for March 1st

Hey there everyone - just a quick update to let you know that it looks like we are all set for Hyde's surgery on March 1st. The plan is for us to be admitted on Sunday, Feb. 28th and we don't have a set time yet but the scheduler said 'noonish' so it definitely won't be first thing in the morning :-(. Hyde's going to be THRILLED to not be able to eat and drink until then - oh well.

If you know anybody that's going to want to be updated on how everything

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Added by Phyllis Ann Talbot on February 23, 2010 at 8:45pm — 7 Comments

Kerri Grey Fundraising Registration

Hi all, I am looking at doing a family fun day fundraiser in October and i want the funds to go to the foundation for children with ahus and to the nephrology department at the childrens hospital here in melbourne. To register with consumer affairs i need to get a letter from the foundation for children with ahus to say that they agree to hope 4 kids with ahus ( What we are calling our fundraiser) to raise funds for them. Does anyone know who i need to contact for this so i can start getting the… Continue

Added by Kerri Grey on February 22, 2010 at 6:08pm — 7 Comments

Crystal Ferreira Nearing the end of our first relapse

Since I first posted about Christopher's first relapse, his numbers have continued to improve, his spirits have been tremendous and finally an appetite! We were moved out of the ICU this afternoon onto the medical floor and are keeping our fingers crossed that all goes as planned. Chris will be an "add-on" for surgery on Monday to have his PD catheter removed and hopefully will be sent home a few days after that. He came in determined to celebrate his birthday with his favorite nurses and it

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Added by Crystal Ferreira on February 20, 2010 at 1:30am — 5 Comments

Kerri Grey Awareness/fundraising

Hi, I have been thinking about whether i should try and do some awareness/fundraising into ahus in Australia as there is nothing. No one has ever heard of it and even the people diagnosed with it have a hard time trying to understand it. I have never done anything like his and do not have any idea what sort of thing i should do or where to start, does anyone have any ideas that could help me. Continue

Added by Kerri Grey on February 18, 2010 at 4:00pm — 11 Comments

Heather Still Creating a better hospital experience

It's been a year now since we've had a inpatient stay with Ryan. I try not to say that out loud because I think it's bad luck, but I guess typing is really not out loud. For the past few weeks I have been following what I believe is the first patient since Ryan at our Children's Hospital with an Atypical HUS diagnosis. While reading updates on this little beauty's status I am quickly reminded of all the horrors that accompany the initial diagnosis. Not only the questions about the illness, bu

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Added by Heather Still on February 18, 2010 at 9:17am — 5 Comments

lisa ann peterson lil miss chloe

good afternoon all...
first i will start with the blood drive what a huge sucess it was.. thank you omak because of you 240 lives were saved. 94 people registered and 80 units of blood were collected.. how neat is that. yesterday chloe had her doctors apt. she had an echo that looked good and an ultrasound and he said that was good as well he said her kidney is s

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Added by lisa ann peterson on February 16, 2010 at 6:11pm — 4 Comments

Martha L. Rusche Soliris

Hi everyone,

Allison, my 17 year old daughter, was diagnosed with aHUS last July. As all of you know, it's been a roller coaster ride. She responded to plasmapheresis after her first episode and was able to get rid of her vascular cath in October. Unfortunately, Allison had another episode in December. Our doctor at Children's Healthcare of Atlanta, Dr. Larry Greenbaum, and his staff moved mountains to get Allison approved for the Soliris clinical trial. She had a port impla
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Added by Martha L. Rusche on February 15, 2010 at 12:02pm — 10 Comments

lisa ann peterson blood drive and then some

well the blood drive was a huge sucess.. we had 94 people register and 80 units of blood were collected.. omak saved 240 lives.. my challenge has been a little rocky i feel like stress is playing a big role in that.. i have body analysis on wed so i will update about that then.. also my princess and i head to spokane in a few and iam incrediably nervous about all of these tests. i keep telling myself that this ahus is a dream and iam going to wake up soon and my princes

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Added by lisa ann peterson on February 15, 2010 at 12:59am — 4 Comments

Jessica Olivia Frysz My long awaited gift of life

Well, I received an email from my potential kidney donor. He received news that he has been approved to get tested to become my donor officially. I am approaching my 22nd birthday on the 23rd of this month, and I am becoming more and more hopeful for my kidney transplant, that I will be able to have a normal life soon enough. I am not trying to rush things by all means, this could be my one and only shot of becoming a successful transplant recipient. As my former nephrologist told me "you are

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Added by Jessica Olivia Frysz on February 14, 2010 at 11:13pm — 12 Comments

Kristina update on Matt the good and the bad

Well its been awhile and I feel bad everytime I write on here its always something bad or with questions I have. I wanted to start off by saying Matt will be 6 months on the 27th of this month. He is growing taller and getting chunck rolls on his arms and legs. Though I believe this is more to holding fluids than baby fat. He is talking and making laughing noises and rolls all over the place. He is always smiling and never (except when he doesnt feel good) fussy. Such a good sleeper thru out

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Added by Kristina on February 13, 2010 at 3:53pm — 4 Comments

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Christy White Christy White created this Ning Network.
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WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!

The Foundation for Children with Atypical HUS 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 "About aHUS" tab 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 2010 genetic testing and treatment.

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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

  

  
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.



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