Putting spotlight on rare diseases

Stiff person syndrome sufferer Tanya Jarvis says blood and plasma donations go a long way to help her treatment.

Stiff person syndrome sufferer Tanya Jarvis says blood and plasma donations go a long way to help her treatment.

A COLAC woman with a rare disease has praised blood donors in the lead-up to Rare Diseases Day on Friday.

Tanya Jarvis has stiff person syndrome, a degenerative disease which causes her to freeze up, lose her balance and experience muscle spasms.

Mrs Jarvis said she was grateful to blood and plasma donors whose donations allowed her to have plasma transfusions two days a month to give her immune system a boost.

“One donation actually helps a lot more people than you realise,” Mrs Jarvis said.

The 43-year-old, who received her diagnosis nearly nine years ago, has depended on a mobility walker since 2012.

Mrs Jarvis has continued to volunteer at Colac’s History Centre, but said she had had “quite a few falls” in the past year.

“I used to walk home, now I’d be too scared because of my balance,” Mrs Jarvis said.

“I can’t see if the grass is level, I need my husband to help me to walk across it, and gravel is difficult, too,” she said.

Mrs Jarvis said the disease affected “the things you take for granted”, including her eyesight, balance and speech.

“In the last six months, my speech has got worse,” Mrs Jarvis said.

“I have to ask other people to speak on the phone for me,” she said.

“I can read one-eyed, I have tried patches and pyramid glasses.

“I get random shakes, for no reason, my legs will go weird, and my head and the corners of my mouth also.

“I miss gardening, working, being a part of everything in life,” Mrs Jarvis said.

Mrs Jarvis founded a Stiff Person Syndrome Australia Facebook page in 2009 to “help other people who are suffering”.

“We who have had SPS for a long time, we need to support the newly diagnosed,” Mrs Jarvis said.

“You have a lot of questions when you are first diagnosed.”

Mrs Jarvis said she wanted to raise awareness on international Rare Diseases Day on February 28 about a lack of scientific knowledge of thousands of other rare diseases, which often led to misdiagnosis or a delay in treatment.

“There are over 7000 rare diseases in the world, it’s quite sad to think we’re only one of them,” she said.

Mrs Jarvis said everyone was connected to rare diseases by “six degrees of separation”.

“Someone you know will either have a rare disease or know someone who does,” she said.

“I want to build awareness of someone else’s reality.”

One Response to “Putting spotlight on rare diseases”

  1. Tanya Jarvis

    And a big Thank you to Mary-Lou, Alison and Nigel . . . . .
    Only one day of the year.
    You have all done a wonderful job x x x