The Atypical HUS Foundation

April 2014 Blog Posts (7)

36-month transplant anniversary - Medicare benefits end

Hi -
Jack is nearing his 36-month transplant anniversary (YAY!), and I believe his Medicare benefits will end.
Can anybody advise on how they managed this. I'm wondering if we need to pro-actively stop his plan, or if it's automatic. A call into Medicare wasn't very fruitful...
Thanks!

Added by Dana M Simone on April 26, 2014 at 10:11am — 2 Comments

ABdominal pain

Hi, it has been awhile since I've been on this site, does anyone have issues with abdominal pain with HUS? Also is there anyone else that may go to Children's hospital in Aurora, CO?

Added by Terry Huber on April 22, 2014 at 9:19pm — 5 Comments

Siblings

Hello all. My husband and I have always wanted three children. After our daughter's diagnosis, we feel that a third is out of the question. We have yet to speak with a genetic counsler. I was curious if anyone has any experience with this or know what our chances of having another child with aHUS are??? Any input would be greatly appreciated.

Heather

Added by Heather on April 16, 2014 at 10:02am — 3 Comments

port

Cole had his 3rd infusion today and as usually the iv was a nightmare...anytime they do blood work or do an iv they have wrap him up in a sheet and he fights the whole time...and he ends up getting poked 2 or three times before they get a vein. The doctor talked to us about putting in a port for his next infusion. It sounds good to me but freaks Cole out a little..does anybody have any positive feedback? Will Cole be able to play normally or will it bother him

Added by Alison Montes on April 10, 2014 at 8:08pm — 8 Comments

aHUS Meetings for 2014

The Foundation for Children with atypical HUS collaborates with other rare disease organizations to help provide information and support to aHUS caregivers, family members, and patients of all ages.

Regional aHUS meetings are a great way to connect and learn!  It’s the perfect way to gain insight into this rare disease, and provides a great background/ follow…

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Added by Linda Burke on April 8, 2014 at 3:00pm — No Comments

19 year old son recently diagnosed with AHUS

My 19 year old college freshman was sick with what we thought was a stomach virus when he went to his local hospital for dehydration. After blood tests revealed acute kidney failure as well as cardiac distress, he was moved to ICU. We had him transferred to a larger hospital. The doctors suspected HUS but were unsure if it was aHUS. We immediately began plasma exchange and dialysis. After two weeks of waiting our genetic test results showed aHUS. Our doctor recommended a transfer to…

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Added by Kerry Waters on April 6, 2014 at 10:30pm — 4 Comments

Getting a Second Opinion?

My 6 yr old grandson was diagnosed with aHUS about 3 weeks ago.  Should we be seeking a second opinion?

Added by Linda Montes on April 2, 2014 at 1:30pm — 2 Comments

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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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