The Atypical HUS Foundation

September 2014 Blog Posts (8)

Biomarkers and aHUS Activity

     Many aHUS patients, parents, caregivers, and supportive family members are firm believers that information is the key to improved patient outcomes.  We strongly agree!

     One hot topic for diagnosis, treatment, and patient monitoring is biomarkers - but most of information surrounding this topic is so new little has been published to date in medical journals.  The Atypical HUS Foundation…

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Added by Linda Burke on September 25, 2014 at 11:30am — 2 Comments

We are the lucky few

Imagine sitting in a room of several hundred people. All with different rare diseases. Imagine hearing there are over 7,000 ultra rare diseases and only 5% of them have a treatment or cure. Imagine being that 95% who right now at this very second feel hopeless, lost and unsure of themselves or a loved ones future. Imagine being an ultra rare patient with no name for your disease or disorder. Fighting daily and not knowing what you are fighting against. How discouraged would you… Continue

Added by Jill Ziegler on September 17, 2014 at 10:16pm — 3 Comments

aHUS Family Conference - REGISTRATION ENDS Friday, Sept 19th

Only 2 Days Left to Register for Atypical HUS Family Conference on Oct. 24-26th at the University of Iowa!…

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Added by Linda Burke on September 17, 2014 at 2:30pm — No Comments

Oct. aHUS Convention in Iowa - Registration ENDS Sept.19th

     

     Last days to register for the University of Iowa's aHUS Family Conference, presented in collaboration with The Atypical HUS Foundation (our new name)!   REGISTER NOW for this the only aHUS conference in the USA to offer 6 medical presentations, plus meet with staff from the rare disease advocacy organizations NORD and Global…

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Added by Linda Burke on September 12, 2014 at 11:20pm — No Comments

Global Genes 2014 Rare Patient Advocacy Summit

In the past year, many have been afforded the opportunity to meet other parents, patients, and members of the medical field who have been affected by or involved with aHUS. These meet-ups have been hosted by NORD and Global Genes, and are a collaborative effort launched and supported by The Atypical HUS Foundation (the new name of the Foundation for Children with Atypical HUS).



Global Genes is an organization that was founded in 2009,…

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Added by Crystal Ferreira on September 8, 2014 at 1:00pm — No Comments

Sickness in this house....

Today has not been the greatest....my oldest stayed home today due to running fever and feeling sick to her stomach....I hate when my children don't feel well....I just wish I could have done more for her but I think I got her fever broke finally and she might return to school tomorrow. I must go to dialysis tomorrow for some more "fun" with my loving machine!!! I have not felt that good today either so I am hoping that my youngest or I don't come down with whatever it is she has. Pray for…

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Added by Sheila Quinn on September 4, 2014 at 11:43pm — 2 Comments

BIG Advancement for aHUS Patients in ENGLAND!

 

     In the England, the National Institute for Health and Clinical Excellence (or NICE) Evaluation Committee provides guidance (particularly monitoring cost-effectiveness) for their nationalized heathcare program, the National Health Service (or NHS).   Atypical HUS patients and their families were expecting a ruling from NICE in late February 2014 to recommend eculizumab (Soliris ®) for inclusion as a commissioned drug.  Watching this ruling…

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Added by Linda Burke on September 4, 2014 at 10:39pm — No Comments

Suffering in Silence

I am sorry I haven't posted since I joined but I think now is a better time to be able to connect with people like me.....I think I really need it right now. I have been struggling with "suffering in silence" and I don't want to talk to my husband about it because it gets him down and I don't like seeing him like that. I am hoping to connect with some others my age and maybe get some helpful hints to life after aHUS!

Added by Sheila Quinn on September 3, 2014 at 1:49am — 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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