The Atypical HUS Foundation

April 2010 Blog Posts (14)

lisas letter to AHUS

dear AHUS,

you have affected my beautiful little girl chloe and you almost took her from me in march 2008, but i just dont think you have met dr. hernandez and chloes mom and of course the girl battling you.. her name is chloe she is a beautiful 5 year old lil girl who even when you make her very sick she doesnt let you get her down. she is not going to let you win, we will not let you win. personally id like to take you out back and kick your ass(excuse my…

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Added by lisa ann peterson on April 30, 2010 at 12:41pm — 5 Comments

Update on Anna

Anna is been doing well, it is been 2 month with out treatment. She still takes iron supplement and lisinopril for BP. She still has some blood in her urine with dip stick it showing 2+ and little bit protein. Rest of her labs looks great even sometimes she looks soo pale it will go thru my mind "if she is ok". We praying that she won't relapse anymore. We still getting her labs done every 2 weeks, our next dr. app on May 24.
She is back to gymnastics, but having hard time to catch up with…
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Added by Svetlana Finley on April 29, 2010 at 1:32am — 6 Comments

Clinic, hike wrap up, and our anniversary - busy update!!

Hey there everyone - lots to update today! Guess I'll start with clinic to get through the 'boring'stuff. It was our first clinic in 6 weeks which is a LONG time for us - so glad to go and check our #'s actually. Everything seems good - Hyde's blood pressure had been REALLY good but of course for a week or 2 there it had to jump back up to pre-nephrectomy levels just to make me nervous - but back down for the last week - so fingers crossed it stays - we…

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Added by Phyllis Ann Talbot on April 26, 2010 at 2:08pm — 5 Comments

ER visit lil miss chloe

well lil miss ended up in the ER last night with tummy pain low gradefever and black runny stool.. labs are being funky and shes a tid bit dehydrated.. we have been pushing fluids all day and she puked this morning.. its amazing how one day she can have great labs and the next they are acting up.. we have a follow up call on monday and labs on thursday.. this is insane my poor lil miss was feeling so ucky.. i had taken her to the clinic earlier that day and they took a look at her…

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Added by lisa ann peterson on April 24, 2010 at 6:45pm — 5 Comments

lil miss chloe update

we went to spokane yesterday and all kidney counts were good.... lil miss has a low white cell count it was 3.7 and norm is 5 to 12 also her platlets were low 213.. dr. h wants a cbc next week to check her white count and platlets again.. i have no idea why her white count would be low all i know is that white cells help fight off infection.. does anyone elses kiddos have low white counts and why??? just curious cause in the 2 years she has been sick we havent had an abnormal white…

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Added by lisa ann peterson on April 23, 2010 at 1:14pm — 5 Comments

A child's perspective

Tonight is the eve of Ryan's 11th birthday. I go in his room as I do every night to tuck him in and I say "You know, it was about this time of night that you told me you were ready to come out of my belly and into the world." He hides his head and says "Yeah, that was before all of this." I asked him what he meant. He said "Before all of this." and pointed to all the scars on his chest and belly from catheters and g-tubes. Of course the tears were welling in my eyes already. So I explained…

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Added by Heather Still on April 21, 2010 at 10:30pm — 5 Comments

sorry for the long long long delay, busy busy Jessie

well, it's coming down to the crunch now. I have a final lab practical coming up next week, a major assignment due next week, and 2 final exams coming up, it's been very stressful. But, on a postive note: I was confronted by 2 of my professors about a proposition they had in mind, that they wanted to setup a donor search for me, to help me find a new kidney. Of course, I didn't turn that proposition down, and now we're in the process of trying to find some information as to how we can go…

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Added by Jessica Olivia Frysz on April 20, 2010 at 9:43am — 5 Comments

Hike for Hyde 2010 a HUGE success!

Hey there everyone - we had a GREAT weekend here in Georgia and so far have raised $28.7 K NET of expenses!!! This will be split 80% to the foundation and 20% to CHOA and I'm pretty confident we WILL hit $30 K within the next week.

Here's some great pics and a video of the event so you can get an idea of how much fun we had!

Pics:…

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Added by Phyllis Ann Talbot on April 19, 2010 at 8:57pm — 4 Comments

chloe peterson update

I WAS JUST REALIZING I HAVENT BLOGGED SINCE BEFORE CHLOES LAST APT.. WELL THE 22ND OF MARCH WAS HER APT AND THE BLOOD WORK LOOKED GOOD.. BUT DR. H SAID REALLY HE DOESNT KNOW WHAT TO DO WITH CHLOE NEXT.. HE DID SAY WE ARE STOPPING PLASMA TREATMENT HE FEELS WE ARE PUTTING HER AT RISJ FOR NOT BEING ABLE TO RECIEVE A TRANSPLANT WHEN HER TIME COMES. HER LAST ONE WILL BE IN MAY. HE SAYS WE ARE JUST GOING TO HAVE TO WAIT AND HOPE WE GET SOLARIS APPROVED BEFORE RELAPSE.. TO BE…

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Added by lisa ann peterson on April 10, 2010 at 6:02pm — 6 Comments

Spread the word ;-)

Linda had a great idea about using facebook to spread the word about the upcoming Hike 4 Hyde we are doing with Bryan Hearn and Kegley Hubbard's family - Post the attach to your facebook status and the link to the video - will hopefully get folks to the Hike page AND to this page for more info!

Join the festivities at this family fun day on April 17th at Swawnee Mtn Preserve Park in Cumming GA, from 9 to 2pm. A major fundraiser for The Foundation…

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Added by Phyllis Ann Talbot on April 4, 2010 at 9:51am — No Comments

the journey is about to start, get your motors running

My mom and I received packages on Friday with our blood tubes, to be cross matched through Johns Hopkins. I'm getting a little bit nervous, as I don't know what to expect, but I am trying to keep that nervous activity down, and keep it from exploding. This is could be my only chance at a normal life, away from a machine, lord only knows what the route is going to be.

I'm doing good otherwise, very stressed out, as the end of the semester is coming near, finals are getting…

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Added by Jessica Olivia Frysz on April 3, 2010 at 9:03pm — 3 Comments

Soliris and Chloe (the younger Chloe)

FYI - I moved updates on Chloe's progress to the Soliris forum. I think that makes more sense, right?

Added by Candace Mulcahy on April 2, 2010 at 7:08pm — 1 Comment

AHUS on the TODAY show!!!

OK - way on a back page of the Today show webpage - but follow this link to my sister representing for AHUS and the upcoming hike - if you watched - they showed the sign several times during the show this morning - yippee!!

http://allday.msnbc.msn.com/archive/2010/04/01/2255077.aspx

Added by Phyllis Ann Talbot on April 1, 2010 at 6:51pm — 3 Comments

Toof update ;-)

Quick update in case you havne't been following the tooth saga on facebook ;-)

Hi there everybody - not a ton to tell you, and I know this is Hyde's carepage - but alot of you had asked about Ruthie and the 'toof' so the big news there is that the 'toof' came out last Friday and the Tooth Fairy did visit and left $1!!!! Ruth was very excited! Of course apparently the…

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Added by Phyllis Ann Talbot on April 1, 2010 at 5:09pm — 1 Comment

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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.

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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.
  
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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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