The Atypical HUS Foundation

September 2012 Blog Posts (5)

Busy Busy Busy!

Wow - so sorry! Just realized how long it's been since I posted an update! Whew - where do I start?

The kids started school back in early August and Hyde is not the biggest fan :-(. Cried alot the first couple of weeks - he's better now but still wakes up every morning telling me he's not going to school today. Oh well. Both of the kids seem to like their teachers and we are settling in at a brand new school so some hiccups there but overall doing well. I have…

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Added by Phyllis Ann Talbot on September 20, 2012 at 9:56am — 2 Comments

Another Longest Day

Well today we went in for the neuropshyc testing to try and gain insight into why Nathan has no trouble understaning and remembering but can't relay the information well and how this knowledge might help us help him.

I had already filled out the standard forms and had the schol fax their counterparts, brought samples of school work, the I.E.P. and Nathan.  The doctor was very interested and I know she'll do her best compiling her observations, Nathan's work and…

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Added by Cheryl Biermann on September 19, 2012 at 8:53am — No Comments

Accumulative aHUS results

Well, it's been a while since we updated.  All is great.  we will be starting neuro pshyc. exam and testing in Sept. As a "minor" result of this disease, which isn't included in any relapse info. on the disease, but is definitely a result of on going damage directly caused by aHUS, Nathan has pretty severe fine motor skill, balance and some gross motor impairment.  As a result of exercise, the gross motor issues are improving.  Nathan has had school led OT since kindergarten and his…

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Added by Cheryl Biermann on September 5, 2012 at 5:29pm — 6 Comments

More Access to Medical Publications via "patientINFORM.org"

Find a medical article or research in abstract format, but want to access the full publication? TRY patientINFORM: 

"patientINFORM is a program that brings together the publishers of the world’s leading medical journals and the world's most trusted health organizations to provide patients and their caregivers with access to some of the most up-to-date, reliable and important research available about…

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Added by Linda Burke on September 5, 2012 at 11:44am — No Comments

help... does anyone have the same symptoms

Hi all, i havent been around  much this year on this site as life has just been crazy busy since the birth of my 5th baby in January!!!

I have been rather concern about Ash lately... he is constantly cold... with or without a fever, he is always getting blankets and shivering even when everyone else is warm... he is also always complaining that he is tired... "mum im just so tired" he will always say to me!!!

I was just wondering if anyone else has had symptoms like…

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Added by Kerri Grey on September 1, 2012 at 8:54am — 4 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.
  
• • • • • • • • • • • •
  
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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