The Atypical HUS Foundation

February 2013 Blog Posts (19)

Rare Disease Day with Alexion!

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Added by Dana M Simone on February 28, 2013 at 5:30pm — 1 Comment

Rare Disease Day - Launch of New Tools for Info and Advocacy!

 

It’s global Rare Disease Day today!

 

 

Awareness and advocacy efforts on behalf of over 6000 rare disease patient populations will be in the spotlight today across the globe, thanks to the collaborative leadership of EURORDIS (European Organisation for Rare Diseases) and NORD (our National Organization of Rare Disorders).

 …

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Added by Linda Burke on February 28, 2013 at 12:00am — No Comments

Survey on interest in another conference in Iowa - please respond on the link - not on this post!

Hi everyone!  we are trying to get some feedback on the level of interest and timing of a possible conference on Atypical HUS at the University of Iowa.  If you can just click on this link and answer the 2 questions - TOTALLY painless I promise and quick - but will give us an easy way to track responses!

http://www.surveymonkey.com/s/V7KBDRC

Also - this is also a test to see how well it works.  We…

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Added by Phyllis Ann Talbot on February 27, 2013 at 3:27pm — No Comments

Hyde's back at school

Quick update for those who were worried - knock on wood Hyde's fever has been down since mid-day Monday so he went back to school today - YIPPEEE!!!! (for my sake not necessarily his!) His cough still sounds bad but as long as he doesn't run a fever again we'll just wait it out. Thanks so much for all the thoughts and prayers and hopefully we can go back to boring!

Haven't had a Hyde funny lately so a few weeks ago Hyde came home with a 'red' on his behavior…

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Added by Phyllis Ann Talbot on February 27, 2013 at 1:09pm — No Comments

Donate Blood!

Today for the first time since Nathan's tplant, I wasn't sick at blood drive time, so I went in and was so moved to see all the other donors.  I posted something on facebook about how quickly they were processing everyone and I get an immediate message from my niece, who was always too young or too tiny until now to donate, when Nathan was always going through so much blood and we had our dedicated donors she always wanted to.  Just saw her update, a picture of her arm, needle and all, with…

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Added by Cheryl Biermann on February 26, 2013 at 8:17pm — No Comments

aHUS Regional Patient Meeting: Atlanta

 

 aHUS Regional Patient Meeting: Atlanta

A re-cap of the recent regional meeting in Atlanta – Feb. 22, 2013

Written by AllieFreitas, contact her at  afreitas@rarediseases.org .  This story is also published in the Atypical Hemolytic Uremic Syn.   online…

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Added by Linda Burke on February 26, 2013 at 10:01am — 1 Comment

Yeah - for the t'plant kids out there - just a big slap up the side of the head that their immune systems aren't normal!

Ughhh - well - we had been doing so well as to be boring (which I LOVE) but Hyde woke up last Thursday with a fever. We went to the dr and he was negative for strep and flu, no ear infection and his chest was clear. (he'd had a cough for the last week or so - normal winter cough). Well - by Thursday night his fever went up to over 104.5 but had broken by Friday morning. We talked to our transplant folks as well as our pediatrician and ended up going to the CHOA…

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Added by Phyllis Ann Talbot on February 25, 2013 at 1:53pm — 2 Comments

Feb 28th is RARE DISEASE DAY

 

Join us in raising awareness for rare disease issues, especially as global Rare Disease Day is held on Thursday February 28th.  Since EURORDIS launched the first Rare Disease Day in 2008, it’s been held on the last day of February each year This year's theme is 'Rare Disorders without Borders'.  We recognize the challenges of rare disease patients and their families, and appreciate all the efforts of medical personnel and researchers who…

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Added by Linda Burke on February 23, 2013 at 1:00am — No Comments

surgery and bps

Just a little request for prayers for us.  A few months ago Nathan passed a very large kidney stone, which later resulted in us discovering a myterious something that looks like it might have blood flow to it.  We have been told it could be scar tissue, or glue from an old procedure to his ureters or a tumor.  Feb. 21 st the urologist will go in with a camera to find out.  

Secondly, he's seen a very large increase in his blood pressure.  We've gone from twice a day 5mg of…

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Added by Cheryl Biermann on February 18, 2013 at 5:49pm — 5 Comments

Infusion 8

Feb 18, 2013 12:30 PM
Chloe's infusion went ok labs came back and her creatinine is still high :( so we will have to keep a close eye on it. We also talked about getting care in Seattle and how that's all going to look for us. It's going to be different that's for sure

Added by lisa ann peterson on February 18, 2013 at 3:32pm — 9 Comments

Our Fund is here to help!

 We started the Zachary Wallace Fund in memory of your Son, Zach who passed from this horrible thing called, aHUS. His brother Ben, now 7 years old has it too. Still no know factor diagnosed yet! So frustration. 

We know the financial stress this disorder can hand us. If you are in need financially we are here to help. We give $200.00 per family a year to help out with whatever your child may need. 

visit us at…

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Added by NATALIE WALLACE on February 17, 2013 at 3:34pm — 2 Comments

Ben has aHUS

Still no known factor deficiency with Ben. Sending labs to Canada again in hopes for a clear answer. 

Added by NATALIE WALLACE on February 17, 2013 at 3:30pm — 3 Comments

Testing Siblings

Our daughter, Devon was diagnosed with aHUS just about a year ago and is doing amazing!  I asked her Hematologist about testing our 8 year old son and she said it is best  to have his pediatrician keep an eye on him at his well check visits.  Our pediatrician thinks we should test him for aHUS.  Has anyone had their other children tested? 

Added by Diane schaller on February 16, 2013 at 9:47pm — 5 Comments

Platelets plummeted suddenly!

I was diagnosed with aHUS about 16 years back and have been on dialysis ever since with an unsuccessful transplant about 15 years back.

I am currently on daily nocturnal home hemo. I use 10,000 units of heparin. Suddenly my platelets have plummeted to 31,000! There have been no symptoms of a low platelet count. I repeated the test and the value is right. My hemoglobin is 11.8 and WBCs are 2,700 (my WBCs have always been around that). I have been asked to run tonight heparin free which…

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Added by Kamal D Shah on February 11, 2013 at 10:27am — 9 Comments

Low level complement activity

My son is having reoccurring issues with his stomach sometimes with a puffy face.last week his vision went blurry he had a puffy face then was off school with stomach ache and feeling sick for 2days. His face is still puffy and he's complaining it hurts. Should I be concerned, I'm not sure if this is low level activity or not .has anyone else had similar issues

Added by debbie thelwell on February 7, 2013 at 3:40pm — 5 Comments

ADULTS with aHUS

Are you an adult aHUS patient? 

     We're inviting adult aHUS patients to submit an article about how a diagnosis of atypical HUS affects family, work, college, and other aspects of daily life.  These articles would become part of a new "Adults with aHUS" tab and enlighten others about coping/issues for adult aHUS patients.  (Please contact linda@atypicalhus.org with your ideas/topics/questions.  Select articles from…

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Added by Linda Burke on February 6, 2013 at 1:24pm — 1 Comment

Solaris treatment 7

Feb 5, 2013 3:26 PM
Well Chloe had treatment again yesterday and labs... Her haptaglobin went back down into the 50's :( not what I was hoping for also her creatinine was .70 it normally sits at .40.. And she had protein in her urine so not what we wanted to see but maybe it will get better we will see after treatment on the 18th..

Added by lisa ann peterson on February 5, 2013 at 9:26pm — No Comments

Soliris in Australia

Hi all,

Here in Australia Soliris is not an available drug for aHUS, it late last year became approved by our governing body - TGA

but now we need to get the governemnt to fund the use of the drug (our health care system is different and our insurance companies dont pay for medications)  Alexion have submitted an application to the Australian government to approve the funding of this drug to make it accessible to all in Australia with aHUS.

The link below…

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Added by Kerri Grey on February 4, 2013 at 9:35pm — 21 Comments

2 big milestones

Hey - this is a cut and past of our carepage update - so some repeats from my previous post on Monday!

Hi everyone, so sorry it's been SO long since we updated! Good news is it's because there's not much to say.

We had 2 pretty major milestones this week and it's always weird to me that these 2 very different anniversary's are so close together. Monday, Jan. 28, marked 5 years since the day I took an 18 mth old Hyde (with 3 yr old Ruthie in tow)…

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Added by Phyllis Ann Talbot on February 1, 2013 at 8:29am — 2 Comments

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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.

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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.
  
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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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