The Atypical HUS Foundation

September 2013 Blog Posts (6)

NORD hosts ORLANDO aHUS Meeting

Hi all,

 

I just wanted to write a quick note to share my experiences at the NORD Conference in Orlando this past weekend.  This was the second NORD AHUS conference that I attended.  The first, being the one held in Atlanta last February.

 

I cannot say enough about the wonderful opportunity provided by these conferences.  It is such a wonderful thing that NORD, The Foundation for Children with Atypical HUS and Alexion all come together to provide such a unique…

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Added by Melissa Hearn on September 24, 2013 at 10:26am — 3 Comments

Stem Cell

Hi everyone, I hope that everyone is doing well.  It's finally cooling down out here in Montana and I'm thankful for that!  I was just wondering if anyone has heard anything about stem cell transplant and aHUS?  My mom had a doctor from Canada talk to her about it.  I've been having a lot of problems with nausea and vomiting lately.  Had to go into the clinic last week because I was so dehydrated, my potassium was very low, and my creatinine took a jump to 7.7.  The week before it was 4.8.…

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Added by Kristen Bruner on September 23, 2013 at 3:20pm — 4 Comments

Global Genes aHUS Meetups: HOUSTON, Oct. 25th-26th

Looking for information about aHUS? 

Join us in Houston, Texas on Saturday, Oct. 26th for the Global Genes: RARE Project aHUS Meetups.  This is a great opportunity for  aHUS patients and their families to connect and learn.  Registration is free, including the Oct. 25th dinner reception and one-night hotel stay at the Marriott Houston Airport Hotel. (Participants are responsible for travel costs.)

Register…

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Added by Linda Burke on September 22, 2013 at 11:28pm — No Comments

So it's been awhile.....

Well I'm first going to apologize to my Ahus friends for not sharing all that has happened in the last 3 months... So first Chloe actually had her biopsy the first week of sept.. She bled a little more than normal and she was not happy about that but she is healed up now and back to her beautiful self.. Second we just celebrated her 9th birthday what a blessing every day has been with her I'm great full for every day and every moment I get to be in her presence I'm blessed to have my beautiful… Continue

Added by lisa ann peterson on September 22, 2013 at 4:00pm — No Comments

Virus and Cold Season

     With the onset of school and the weather changingmalso comes the viruses most kids get through with a bit of pampering by Mom and Dad or Husband and Wife.  For our group of aHUS patients, however, it usually means more discomfort, more medicines, longer recuperation and even hospital stays.  I'd like to share with you something we have done periodically through the years when we knew Nathat would be more vulnerable, for example, after surgeries or other illnesses.  

1.  Hand…

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Added by Cheryl Biermann on September 6, 2013 at 8:34am — 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.
  
• • • • • • • • • • • •
  
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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