500,000 Steps for Scleroderma is coming to the Orana Hotel

A terminally ill mum with a rare autoimmune disease is "turning to stone" from the outside-in as her skin and organs slowly solidify.

Trish Rainbow-Noack, from New South Wales, was diagnosed with the terrifying disease, scleroderma, two years ago after she hadn't been feeling well and noticed her skin was hardening.

The then fit 56-year-old, who had a passion for swimming, bushwalking and the outdoors, couldn't breathe properly and was admitted to hospital. Doctors told her she was having an heart attack.

After meeting with several physicians, a specialist eventually diagnosed her with scleroderma - a disease she had never heard of.

"It's called the disease that turns your body to stone and that's because it literally does just that - it goes hard," her daughter, Tamara, told 9news.com.au.

"The easiest way to describe the disease is the thickening and hardening of the skin. "And after your skin turns hard, your organs mimic what your skin is doing and turn to stone as well."

In the two years following the diagnosis, Ms Rainbow-Noack's quality of life has plummeted. The active and playful mother-of-two and grandmother-of-nine was left at the worst of times barely able to get out of bed.

Her life has been taken away from her.

"It feels as if you were to put a vacuum cleaner in a bag - the disease just sucks your skin to your bones," Ms Rainbow-Noack said.

"You can't open and close your hands because the skin is so tight.

"It's completely minimised my quality of life, I can't and never will be able to do some of the things I loved like bush walking and swimming.

"And because of that I feel like I'm limiting my family from doing things too."

Scleroderma becomes fatal when the heart, lungs or kidneys harden and are no longer able to function.

Come and support them as they raise money for scleroderma research. They will be coming to the Orana Hotel on their way through to complete their nearly 500km walk on the 24th of June at 12pm. See you there!

#IncredibleStrength #500000Steps
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