Mum and daughter suffer same disease, but don't know why
PAULINE Johnston knows all about the symptoms of the rare Guillian-Barre syndrome after suffering from it herself, so when her daughter Megan called her in tears describing her symptoms, Pauline told her to get to a doctor immediately.
Fifteen years ago after a stress filled year and overcoming a nasty flu, Pauline was diagnosed with the autoimmune syndrome.
The syndrome first took Pauline's ability to move her arms, then it was her knees and shortly after she lost everything.
"A lot of people think the syndrome is a virus," she said.
"But it's not, it's actually triggered by a virus. I was getting over a flu. On a Monday I started to feel the numbness in my hands."
"On the Wednesday I was at my daughter's place and the kids were laughing at me because my knees kept giving out and I couldn't walk properly."
By Thursday, the syndrome had crept all through Pauline's body rendering her incapable of any movement.
She was flown to Rockhampton, then Brisbane and placed in ICU. After a lumbar puncture procedure she was diagnosed.
"I had no control of my body, I couldn't do anything," she said.
"When I was itchy I couldn't even scratch myself."
After five weeks in Brisbane Pauline was flown back to Rockhampton where she began rehab and water therapy. Five months later she began to feel movement again in her hands.
"I didn't sleep properly for five months," she said.
"Every night when I was lying in bed I saw this horrible black creature hanging off the ceiling, it had hideous big teeth and it would just stare at me."
Pauline said she later found out it was a "manifestation of her depression" but when she finally left hospital to go back home it became nothing but a dot on her ceiling.
It took two years for Pauline to get her life back on track, and re-learn how to do the basic things in life.
So when her daughter Megan Johnston, 43, rang in October last year to say she couldn't feel her face or her legs, Pauline feared the worst.
"What the syndrome does is when you have a virus, your immune system works to rid of it, like usual," she said.
"But once the virus is gone, and your immune system keeps working and it flips on itself and starts attacking the nervous system.
"It's so painful, your nerves are stripped of their coating and it's just raw pain, constantly."
Megan was flown to hospital herself where she was also diagnosed with Guillian-Barre syndrome.
While her case is not as bad as her mother's and is out of hospital, Megan has trouble walking and cannot work.
"Before the syndrome she was a very full on girl, couldn't stand just being in bed all day," Pauline said.
"But she is receiving treatment to aid her in recovery, something that wasn't around 15 years ago."
Guillian-Barre syndrome is not hereditary and you cannot catch it from another person.
According to Brain Foundation Australian, the syndrome usually follows after a bacterial or viral infection.
Both Pauline and Megan are still looking for the answers, and said they will volunteer for DNA testing of the syndrome, should the opportunity arise.
"People need to know about it," Pauline said.
"Anyone in the world could get it, what happened to me and my daughter could happen to anyone, even if it is a rare disease."