The Atypical HUS Foundation

February 2010 Blog Posts (22)

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

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…

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

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… Continue

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

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

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.

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

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,…

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

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…

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

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…
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Added by Martha L. Rusche on February 15, 2010 at 12:02pm — 10 Comments

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…

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

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…

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

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

Riding out our first relapse...

As I sit beside Christopher, staring at all the familiar nursing faces, I think back at how little we know about his illness and how we took each day of the past four and a half months one step at a time. As I mentioned in our initial story, the "calm before the storm" was back in December when they took Christopher off his blood pressure medication.

Christopher is now in the midst of his first relapse. He was admitted February 4th, but this time I've felt that we've had the…

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Added by Crystal Ferreira on February 12, 2010 at 7:00pm — 5 Comments

Our first encounter with aHUS

On August 16, 2009 Christopher was admitted to Childrens Hospital Oakland. The hospital setting wasn't unfamiliar to us as we had been visiting my dad for the previous two weeks. Grandpa had been admitted with what the doctors initially thought was diverticolitis, a few days and one exploratory surgery later would soon start our horrible spiral...grandpa had stage IV cancer with an unkown primary.

During our visit (on Aug. 15th) to see my dad I noticed that Christopher didn't…

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Added by Crystal Ferreira on February 12, 2010 at 3:12am — 5 Comments

Update of events

My daughter Jessica is quickly approaching her 22nd birthday on 2/23. In reviewing the beginning of the year we remember the year she got diagnosed in January 1989. Yes it is a strange rememberance. But it has marked our lives and defined them. In reviewing that date I'm quickly reminded that we are still in the transplant evaluation mode. Jesssica has been trying to train her bladder and I believe she has at least successfully taken in 150cc but not able to hold it too well. That is the… Continue

Added by Colette Ann Frysz on February 11, 2010 at 8:52am — No Comments

update for lil miss chloe......

busy,busy in the peterson home.. first we have a big blood drive this weekend, they wil be taking the blood on chloes bus. second lil miss had her apt on monday and he said her tonsils are large for her age and he also recomended a sleep study to make sure that it is her tonsils that are causing the sleep problems before they operate on those tonsils he said he would…
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Added by lisa ann peterson on February 10, 2010 at 10:03am — 6 Comments

My story

I am a 34 year old male living in India. I was diagnosed with Atypical HUS in July 1997, when I was 22. I had taken some vaccinations - Typhoid, MMR and Hep B - a prerequisite for travel to the US. I was going to the US to pursue my Master's in Chemical Engineering. Within a couple of days of taking the vaccinations I started feeling… Continue

Added by Kamal D Shah on February 10, 2010 at 9:16am — 14 Comments

Our Story

Hi!

My name is Kortnee and my son, Kaleb, who will be 3 in April, was diagnosed with aHUS just 3 weeks ago. It's been a whirlwind experience! We began bringing him into the pediatrician about 4 weeks ago with, what I thought was, pink eye. The eye infection did not go away after a week of antibiotic ointment so I brought him in again. This time he had an ear infection on top of the eye infection.

By that evening he began vomiting. I brought him in… Continue

Added by Kortnee Fornetti on February 9, 2010 at 12:00am — 4 Comments

fistula placement

Here we go, Friday Nathan has his fistula placement for a safer dialysis line, like Phyllis, I'm worried about the what-ifs, too many experiences where the exception was the rule...today, he had a seizure due to low potassium. (probably). The last thing you want to worry about before surgery, but I'll count blessings too, he's not sick and his weight is good! The seizure was pretty minor as they go, but I'm a worrier. Wish us luck!

Added by Cheryl Biermann on February 8, 2010 at 6:15pm — 9 Comments

Surgery, clinic, hike - whew busy update!

First - surgery

Well they've gotten Hyde's nephrectomy tentatively scheduled for March 1st. Waiting on the surgeon's scheduler to call back to just confirm that everything is all lined up with the hospital. We will most likely be going in on Feb. 28th in order to be there are ready to go. Not sure of the time yet - will update later. We still haven't decided 100% how we will do the surgery - right now our…

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Added by Phyllis Ann Talbot on February 8, 2010 at 5:45pm — 5 Comments

Anna's visit to ER

Anna had unexpected ER visit last night. She started running fever i made phone call to doctor on call David. He decided to save our time and send us to local ER. Why sometimes i don't listen to my self? I was thinking what is the right choice to take her in. From one view i didn't wanted to drive an hour to children's hospital to her her cultures done. My doctor was saying the same thing and it was ok to go to local hospital even in the past we had…
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Added by Svetlana Finley on February 7, 2010 at 7:49pm — 3 Comments

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