Sufferer shares her story

Stiff person syndrome has forced Tanya Jarvis to use a walking frame.

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.

 

2 Responses to “Sufferer shares her story”

  1. Debra Marr

    I am another Australian with SPS, it took 13 years for me to be diagnosed. From that moment my life changed forever, was a very lonely few years till I put out a plea for anyone else who had it in a national Woman’s magazine.
    My 1st contact with another sufferer was about a week later via phone & we just cried tears of joy to be able to speak about things no one else could understand.
    Once my medication was right I was able to resume an almost normal though much slower life & enjoy my new role as a grandmother.
    I’ve have just celebrated my eldest grandson’s 18th birthday, something the doctor’s told me would not happen.
    A few months ago I stumbled upon the US SPS Face Book support group then the Australian page set up by Tanya Jarvis.
    It has been wonderful to know there are at least 17 of us very unique people here in Australia & have contact daily with others here & around the world that get it. We are all about helping people understand this horrid disorder & raising awareness.
    Do wish our doctors would speak to each other & educate themselves so they can help us. My specialist says they are learning from me, thought it was meant to be the other way round.

  2. Karen

    I also suffer from this rare 1 in a million Disease of Stiff Man Syndrome. I am 42 now & was diagnosed in San Francisco at UCSF at age of 24. I am very lucky that my meds give me mobility & can walk without a walker. I had a relapse in 1997 & some stiffness here & there but by grace of God haven’t had a full blown relapse since. We are a military family so I have had to switch Dr.’s more than once & am so annoyed when some have said “I have another patient with the same illness”. I just let them think they know what their talking about but I always carry a binder of my diagnoses when seeing a Dr. so they also understand why I am taking so much Diazepam. I tried Plasma Pheresis while taking immunosuppresants which didn’t help at all. After being a guinea pig for any testing the neurologist thought may help he opted to treat systematically by meds. I live by the rule that “God won’t give you more than you can handle” & also my own thought of “things could be worse”. More articles & information needs to be publicly made about the disease with no cure so someday hopefully a cure is found!