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Barbara Smart's aching 35-year wait for diagnosis
Friday 9 December 2011
Although the lady in question does not have ME/CFS, Barbara Smart's story will be familiar to a lot of sufferers:
FOR 35 years, no one knew what was wrong with Barbara Smart.
As first revealed on our iPad last night, the Joondanna resident contracted scabies when her sister returned from Turkey in 1976, and she never got better.
During the next few decades, fatigue, weakness and a hazy mind saw her diagnosed with chronic fatigue syndrome and even confined to a psychiatric ward.
By the time a South African specialist diagnosed her with epidemic typhus in April this year, she was a broken woman with no real chance of recovery.
“I knew 35 years ago that I had something and I knew my son had something, but the doctors here couldn’t pinpoint it and then they just gave up. They said it was psychosomatic,” she said.
“The doctors couldn’t diagnose me with anything because it was not on their little list - so they said I had something wrong with me mentally and I ended up in the psychiatric ward.
“To be treated the way I was by the medical profession ... my self-esteem was non-existent from that point on.”
Ms Smart’s son was a few weeks old when she contracted epidemic typhus - a rare condition in developed countries but a curable one if identified early enough.
Her son, who grew up suffering the same debilitating symptoms, took his own life seven years ago.
“He was home-schooled for five years because he was so ill. If he had got rid of this and lived a normal life he would never have done it,” Ms Smart said.
“His life was wasted; he couldn’t do the things other young people did. My son had no life.”
The 63-year-old said her condition was physically and mentally devastating.
“It’s an intracellular organism and it invades every single cell of your body, including your organs and your brain. It can lead to things like multiple sclerosis, Parkinson’s disease and schizophrenia,” she said.
“You feel like every cell is weighted down with lead, your brain is full of cotton wool and your thoughts can’t connect.
“It’s so insidious; it’s almost like I’m carrying something from another planet.
“The worst is the loss of identity. I think you gain your sense of self through what you achieve and I’ve achieved nothing.”
Ms Smart hoped her story would raise awareness about typhus and help others avoid the same nightmare.
“I don’t socialise much because it’s incredibly draining. It’s an existence, and if I didn’t enjoy reading, I think I’d go mad," she said.
“It’s a wasted life; there are so many things I wanted to do.
“I guess I’d like to make people aware that this condition exists. Maybe they are suffering and don’t know what’s going on.”
* Lifeline's telephone counselling service is 131 114
* For more on this story or for news in your suburb, visit www.inmycommunity.com.au
The above, with comments, originally appeared here.
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