The Atypical HUS Foundation

May 2014 Blog Posts (12)

My story

I was diagnosed with a-HUS in October 2013. I had been sickish for a day, then on Sunday I had bad diarrhea, stomach cramps and vomiting. I couldn't walk but my husband managed to get me to the car to go to Mercy Hospital ER here in Oklahoma City. When we got there I was almost out of it and couldn't tell them my symptoms. I remember the nurse saying " We can't help you unless we know what's wrong with you." I went into a coma. They ask my husband my medical history but he couldn't remember as… Continue

Added by Marilyn Cline on May 30, 2014 at 11:35pm — 8 Comments

Memorial Day

     On this Memorial Day, as family and friends gather for a day of relaxation and celebration, we recall the day’s deeper meaning.

     In Memorial….of all those we’ve cherished and lost, and all those who face life struggling with serious challenges.  We honor those who have served our country and all of mankind, especially those now in harm’s way, and recognize the deep sacrifices of their family and friends marking today without their loved one’s…

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Added by Linda Burke on May 26, 2014 at 9:30am — No Comments

Spain's aHUS Conference for Nephrologists

 

     A conference on The Complement System and Thrombotic Microangiopathy was recently held in Spain. More than 120 nephrologists met in Madrid for this event which focused on continuing education regarding complement and TMA issues specific to aHUS.  Physicians, researchers and others interested in atypical HUS expanded their knowledge of this ultra-rare disease, especially regarding three points that remain key issues: the differential diagnosis between aHUS and…

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Added by Linda Burke on May 21, 2014 at 11:00am — No Comments

Prayers needed for newly diagnosed Ahus post transplant

I am asking for prayers tonight for a new family. Husband received a transplant a short time ago. He was misdiagnosed but he really had Ahus. He is losing functioning but is on soliris. We need to pray that the hospital he is in will keep him on soliris. She will introduce herself on here soon but please pray for peace for her and healing for him.
I've told her about our family here and let's surround them with prayer and support!
Thanks
Jill Ziegler

Added by Jill Ziegler on May 19, 2014 at 10:10pm — No Comments

Free Dinner and Hotel - Act FAST

Now that we've got your attention....REGISTER Today  

for the May 30-31st aHUS Regional Meetings- Hotel Space is Limited!

     Two great…

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Added by Linda Burke on May 16, 2014 at 2:30pm — No Comments

Issues with Soliris Infusion through Home Health Care

Hi! I need some advice. My son Will is getting infusions every two weeks in Atlanta. Initially, we thought he would be able to get infusions via home health care, but so far we are having trouble getting companies to agree to the terms. I have been talking with a case manager at Soliris and a representative from Egleston Children's Hospital. We keep hitting a dead end. Do all of you have to travel long distances to be able to receive your infusions. We have a four hour drive to our…

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Added by Kerry Waters on May 13, 2014 at 10:47pm — 4 Comments

Crickets are Chirping....Be Connected, Gather Inspiration!

I'm a bit bored and feeling uninspired.....you?

     Not unhappy or depressed, mind you.   The weather in Maine is beginning to turn lovely, and it's certainly tempting to max out my credit card at our local garden center.  I'll confess - I just popped in a luscious lavender plant to a perennial border garden today and it's fabulous scent was heady and uplifting!  <Insert one of those trite sayings about gardening being good for the soul, or cheap therapy, HERE.>  …

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Added by Linda Burke on May 13, 2014 at 12:00am — 1 Comment

Insurance Issues? Join the Global Genes Webinar MAY 28th

     Significant changes in health insurance coverage have triggered much concern and many questions for rare disease patients and their caregivers.  Missed the Global Genes webinar ‘Navigating Insurance Issues’?  Great news:  Click this link to their ‘Navigating Insurance Issues- Part 1’  to view the webinar slide presentation…

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Added by Linda Burke on May 8, 2014 at 10:30pm — No Comments

More Data about aHUS Becomes Available!

     Cause to celebrate this week spread across multiple aHUS info outlets, as more data became available on Monday for aHUS patients, advocacy groups, and also both the medical and research communities.  We’ve created a blog about the impact of the RareConnect aHUS Global Survey results being released, with survey data and graphs currently online.  As survey data is interpreted and…

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Added by Linda Burke on May 7, 2014 at 11:18am — No Comments

aHUS Global Poll – the 2014 Survey Results!

     With 214 respondents, replying in 6 different languages across 17 nations, the 2014 aHUS Global Poll results have just been released.  You’ll find the survey data, with graphs, available at the link posted below.  While the people have worked hard to gather and present the current format of aHUS Global Survey information, much hard work lies ahead to analyze and interpret the data.  We’ll keep you posted as the poll information is available with added commentary…

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Added by Linda Burke on May 5, 2014 at 3:00pm — 3 Comments

2014 aHUS Meeting Schedule

GREAT opportunities to meet and learn about atypical HUS! 

The Foundation for Children with Atypical HUS is pleased to announce a robust schedule of meetings to learn about aHUS from medical experts, to connect with other families who are challenged by aHUS, and to explore options and resources available to…

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Added by Linda Burke on May 3, 2014 at 1:00am — No Comments

Journey

My 7 year old son's "Spring Break- 2014" started with a fever and progressed into diarrhea, then bloody diarrhea.
ER visit, 3 day admission for dehydration.....followed by transfer to Joe DiMaggio Children's Hospital (2 hours from home). Through CVVH, hemodialysis, many blood and platelet transfusions, 3 Soliris infusions...... 28 days later- we are home! Thank you God!

What a journey.....and it is just the beginning!

Added by Lisa Grooms on May 1, 2014 at 8:09pm — 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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