The Atypical HUS Foundation

July 2012 Blog Posts (5)

My son Grant was diagnosed with aHUS on Mother's day in 2010 at age five. He had typical symptoms of a stomach bug .  The next morning my husband noticed his urine was coca-colored.  Later that day a…

My son Grant was diagnosed with aHUS on Mother's day in 2010 at age five. He had typical symptoms of a stomach bug .  The next morning my husband noticed his urine was coca-colored.  Later that day after being initially diagnosed in a local ER he was rushed by ambulance to Children's hospital in Detroit, MI.  There he was in the ICU for a couple of days and then was able to leave by about day 6.  His case would be considered mild since he never required any interventions.  He came very…

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Added by Amanda Summers on July 30, 2012 at 11:03pm — 1 Comment

Introducing our MEDICAL ADVISORY PANEL

The Foundation for Children with Atypical HUS is pleased to introduce its Medical Advisory Panel

 We appreciate their service and recognize that these physicians’ unique blend

of skills and experience offer valued guidance in core areas important to aHUS patients and their families.

Dr. Craig Belsha                    Dr. Joseph J. Krug                    Dr.…

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Added by Linda Burke on July 27, 2012 at 1:00pm — 3 Comments

It's been quite a while; busy, busy, busy!

I know that many of you are curious to find out how I have been doing with my new job and if I am enjoying it? Well, I am doing splendid! I am working like crazy now, and I am slowly regaining my confidence back when I am performing certain tasks at work; such as blood draws, because just like humans dogs and cats don't like to be poked more than once, but sometimes it just happens that way :( When I am performing certain tasks, I try to think of myself in that animal's situation, do I want…

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Added by Jessica Olivia Frysz on July 25, 2012 at 9:57am — 1 Comment

Our vacation nightmare

Last year my family and I went on vacation to the Isle of Palms in South Carolina. We drove from Arkansas to the coast of South Carolina! We stopped the first night in Dollywood, my sister is a huge Dolly Parton fan :) By the way, my name is Kelli Willbanks. My parents, my sister, her husband and his son, my husband, our two kids (Olivia and Trevor) and I went on this vacation. We were soooo excited, we had never been to that part of the ocean before!

Olivia was three years old then (July… Continue

Added by Kelli Willbanks on July 20, 2012 at 10:56am — 9 Comments

New American Law: The FDA "Safety and Innovation Act"

Enacted into American law on July 9th, 2012, the U.S. Food and Drug Administration (FDA) Safety and Innovation Act is noted as including "the most groundbreaking measures for rare disease patients and their families since the Orphan Drug Act of 1983".

 

"This legislation represents true progress for people with rare diseases, who often struggle to access treatments for their disorders," NORD President and CEO Peter L. Saltonstall said.  The Safety and Innovation Act renews user…

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Added by Linda Burke on July 12, 2012 at 12:00am — 1 Comment

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