A COLAC woman has taken an awareness campaign about her rare disease to the national stage.
Tanya Jarvis, who suffers from stiff person syndrome, penned an article in this week’s That’s Life! magazine, which has more than a million readers.
She said spreading information about more than 8000 rare diseases could help save and improve lives.
“I’m just passionate about getting that awareness out there and cutting down diagnosis time,” Mrs Jarvis said.
“It took five years to find what was wrong with me,” she said.
“My husband and my son actually Googled it.”
Stiff person syndrome is a degenerative disease which randomly causes the body to go completely rigid.
Monthly plasma transfusions can dull the effects of the condition.
Mrs Jarvis said That’s Life! contacted her after seeing her Facebook page dedicated to stiff person syndrome.
“They were looking for a female who was inspirational or still continuing to help other people,” she said.
The Elliminyt resident said social media was an “amazing” way to share information and support other sufferers, which she said was important because there was little information available about rare diseases like SPS.
“Everyone’s very nice and very supportive. I talk to a man in Scotland probably every day just through the internet,” Mrs Jarvis said.
“What I do find out I try to pass on to the site,” she said.
Mrs Jarvis, who has visited SPS sufferers in England who she met on Facebook, has started using a walking frame after previously walking with a crutch.
“I had a really bad fall and hurt my coccyx. I realised it was time to move on to the walker,” Mrs Jarvis said.
The mother of two said people often failed to realise how crippling the condition was because of her positive, happy nature.
But Mrs Jarvis said support from her family and the Colac community made her journey easier.
“My wonderful husband, children, my very special mum and some true friends all help me enormously, more than anyone would know,” she said.