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May 2002

Times change - A family's story about living with EB

By Robyn Gobert,
Past President of DEBRA Australia Inc.

An 8 year old child with EB.

Cottonwool Baby syndrome

In 1952, I was born with epidermolysis bullosa (EB). It is a skin condition now known as "Cottonwool Baby Syndrome".

Life was very different fifty years ago and no one knew about EB. I suffered as a child and underwent numerous quack remedies recommended by well meaning people who didn’t know any more, or any better, than we did.

No one knew it was hereditary. Imagine my shock when my own daughter was also born with EB.

I have written the story of how EB effected my own life, growing up in a rural setting in far north Queensland, and then coping with raising a child with severe disabilities. Part of this time I lived on a disability pension as a sole parent.

When my daughter came home from her first day of school almost raw, I poured my heart out to the Mike Walsh Show and New Idea. Within days I was on a plane and in Sydney, where I appeared on the show and was photographed for New Idea.

DEBRA

As it was The Year Of The Disabled I managed to create enough media interest to support my efforts. Suddenly I was in demand, appearing on TV across the country, speaking on radio and giving newspaper interviews. I undertook to raise $45,000 a year to fund medical research into EB and eventually founded a national charity known as the Dystrophic Epidermolysis Bullosa Research Association (DEBRA) Australia Inc.

For the whole story, please go to PAGE 2.

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