The Atypical HUS Foundation

November 2014 Blog Posts (13)

Cyber Shopping Benefits aHUS Research

     Taking advantage of Black Friday deals online this week?  Sending flowers for the holidays?  Booking holiday, work, or vacation travel?  The Atypical HUS Foundation supports aHUS research through grants, and we’re excited that a generous donor is matching funds we raise until December 31, 2014!  We can only do this with your support, so we’ve launched fundraising drives through iGive.com and our…

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Added by Linda Burke on November 25, 2014 at 12:00am — 3 Comments

aHUS conference at U of Iowa

Thanks for the aHUS conference at U of Iowa on Oct. 24-26. I haven't updated in a while and that is thanks to Soliris. It allows my wife and I to almost not have to think about aHUS. It was nice to take a weekend in Iowa and spend time hearing stories and listening. My wife and I came away with a lot. We understand the disease about as much as we can, but there are little details that we pick up.

1. I regret not getting a therapist for Phoebe when she was sick, and I think it is…

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Added by Brett Lettiere on November 24, 2014 at 11:35pm — 1 Comment

aHUS at ASN

The American Society of Nephrology just convened for their annual meeting. There were many abstracts relating to aHUS. I will try to summarize highlights soon, but if you would like to browse them:

Go to the ASN Kidney Week Abstracts website. At the middle/top, under "Kidney Week 2014 Abstracts" click on "Program Builder Site". You have the option to create an account, but I just clicked on "guest access". Once you…

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Added by Grace on November 20, 2014 at 9:43pm — 3 Comments

More pre-clinical data on OMS721

If you’ve signed up to receive press releases from Omeros, you may have been intrigued by yesterday’s news “OMS721 Inhibits Thrombus Formation in Sera from aHUS Patients: Data Bode Well for Ongoing Success of Ongoing Phase 2 Trial in Thrombotic Microangiopathies.”…

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Added by Grace on November 20, 2014 at 9:00pm — No Comments

Our story with Ahus

Hello my name is Victoria Edwards and my niece Celeste is 8 years old and recently got diagnosed with Ahus in August of 2014. This is our story......

      Our story begins in August of 2014. Celeste wasn't feeling well and had been sick for a couple of days. She was throwing up an had severe stomach pains. She went to the doctor and was given a order to do an enema for constipation and to go home. My sister went home and did as the doctor said. Celeste wasn't getting any better that…

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Added by Victoria Edwards on November 20, 2014 at 1:12pm — 7 Comments

New Meningitis Vaccine

If you or a beloved aHUS patient are on Soliris, you may be wondering about the new meningococcal vaccine; Lisa Grooms posted the FDA press release from October 29, 2014 in a blog post. Before now, the vaccines approved in the US covered the four serotypes A, C, W, and Y of Neisseria meningitides, but not serotype B. These five serotypes can cause serious…

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Added by Grace on November 17, 2014 at 10:01pm — 2 Comments

Insurance Coverage - Comparing HealthCare Plans for aHUS Patients

    

       It's that time of year, and likely your inbox has messages regarding insurance plans and coverage options with urgent messages - "Sign up now, deadlines are closing in!"  It's a bit more difficult, and more seems at stake, for those challenged by a rare disease diagnosis.  How best to proceed?

       Get informed!  It helps to understand the lingo, such as 'annual MOOP' (maximum out of pocket expenses) and OON (out of network, for both…

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Added by Linda Burke on November 13, 2014 at 2:00pm — No Comments

Jonathan's Story...*Updated*

This is the story I shared at the 2014 NORD aHUS Regional Patient Meeting in San Antonio. I wanted to post it here, so that those who were unable to attend, can feel the hope that radiates from my son, Jonathan. He is definitely, my hero, as all those who are affected by aHUS.

JONATHAN'S STORY…

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Added by Donna Kolp on November 12, 2014 at 10:18am — 1 Comment

Volunteers - At the HEART of aHUS Advocacy and Programs

Volunteer Spirit – Catch It!

     The 2014 Atypical HUS Family Conference at the University of Iowa was a tremendous opportunity to get informed about aHUS medical information and advancements in aHUS research.  Gathering together allowed patients, caregivers, and family members a chance to share their story and voice their concerns as well as discuss hopes…

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Added by Linda Burke on November 10, 2014 at 11:00pm — No Comments

My Journey this far with aHUS

Early in September 2014, I started not feeling well. I was tired all the time, dizzy, getting headaches, brain fog, dark urine, and overall not feeling well. I kept telling myself that I needed to go have blood work done, but I kept putting it off.

 

Sunday, Sept 6th, I knew something wasn’t right. So off to the ER we went. After waiting forever to see a doctor. I had blood work drawn, got one bag of IV saline and was released with…

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Added by Amber S Schlaht on November 10, 2014 at 11:04am — 5 Comments

2014 NORD aHUS Regional Patient Meeting in San Antonio, Texas

Happy Sunday Everyone!

I just thought I would take a moment to express my sincere thanks and appreciation to NORD, Alexion…

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Added by Donna Kolp on November 9, 2014 at 6:26pm — 2 Comments

EMDR PTSD Anxiety

In Iowa, a few parents shared that their children were struggling with PTSD and/or anxiety, so I thought I would share this with you. Our 11 year old daughter Devon has also been struggling the past 8 months fear, anxiety and abdominal pain.  We have had good success with a homeopathic remedy, but it's still there. She had a little performance at school the other day, and unfortunately she fainted twice due to what we think was a panic attack. After the school called 911 and she was checked…

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Added by Diane schaller on November 4, 2014 at 1:46pm — 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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