Woman Speaks Out for People with Rare Diseases

RVA News

New RVA supporter, Kath of Deer Park VIC, talks of her daily struggle living with a rare disease and the hope that RVA brings to her and her family.

The Brimbank mother was struck down with Guillain-Barre syndrome in August 2011.

Guillain-Barre is a rare auto-immune condition that results in a spreading paralysis. After a bout of bronchitis, Mrs Donaldson woke up one morning feeling like she’d been “hit by a bus.”

“I was really tired with pain all over my body,” she said. “The next day I felt better so I went to work, but the following day I felt worse.”

Within three days, her vision was blurry, and she could not feel her feet or walk down steps. By the end of the weekend, she was in hospital undergoing scans and tests. Doctors initially thought she had suffered a mild stroke, but after many tests, it was revealed to be GBS.

Her symptoms included tingling, severe fatigue, laboured breathing, and weakness. “I could no longer do all those little things we take for granted,” she said. “I was so used to being very independent, but suddenly I became dependent on everyone.”

Mrs Donaldson gradually built up her strength with physiotherapy, and despite numbness in the hands, her specialists have said she still may have another two or three years before she returns to normal – if at all. “I’m feeling much better though,” she said.

“You do go through a time where you think why me, but now I think I got GBS for a reason, so I could do something to bring awareness of it. “I’m feeling much better, and I’m up for the challenge.”

Mrs Donaldson has become a member of Rare Voices Australia, a new organisation which aims to represent Australians living with a rare disease.

She hopes to set up a support group in the western suburbs, and raise money for more research into the disease, of which little is known.

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