By Sarah Schwager
LISA Brains, who suffers from a rare skin disease, says it’s the little things in life that make her happy.
Lisa copes daily with the pain, itching, constant treatment and lack of mobility that come with the condition, epidermolysis bullosa.
While she says she is slowly getting worse, she retains a positive outlook on life.
“I’m fairly stable. But I’ve had my ups and downs,” she said.
Lisa was first profiled in the Gazette more than three years ago after having a feeding tube inserted into her stomach because sores inside her throat had closed off her oesophagus.
“I’ve always got throat problems so I’m very thankful for the feeding tube in my tummy,” she said.
Lisa also suffers from eczema, which, unfortunately, has just flared up again.
“Other than that I’m going well.”
She has since created a minifarm, with two geese, 11 chickens, one duck, four cats and a dog.
“They give me such joy,” she said. “I find these animals really good for my health because they keep me moving.
“There was a period of time when I didn’t leave the house. Now every day I go outside. It keeps my circulation going.”
When Lisa was 22 she was told she had 12 months to live.
But Lisa, now 33, says she is “not at the end of the road by any stretch”.
“I’m still kicking, I’m not bedridden or anything,” she said.
“It’s a little bit like the elderly. Like if you’re 70, your body starts to pack up, but slowly.”
Lisa said she has had many ups and downs in the last decade but the highlight was her surprise 30th birthday party in November 2001 held at the Beaconsfield Hotel and organised by her mother, Barbara Hose, carer, Rebecca Campbell, and good friend, Angela Pattinson.
“Mum made it like a ‘This is Your Life’ thing,” she said.
“It was a celebration that I’d made 30 years.”
Her brother, Andrew, came over from England with his girlfriend, and other family, including her sister Jaymee Kenny, came from interstate.
“All my doctors and even the local chemist came. There were people there I hadn’t seen in 10 years.”
Lisa said the visit from her brother had come as a big shock.
“I was totally convinced he was in England. He’d just visited in August,” she said.
Lisa said while there were many things she missed, like her former job at Telstra, she had learned to be happy with the small things in life.
“I really do miss working in an office environment, but I know I could never go back to it,” she said.
Lisa has many complications, including the eczema, which she has lived with for the past 14 years.
“I thought the one thing I’d never get was another skin disease,” she said.
“Assume nothing, or everything. Absolutely anything is possible. That’s my saying.”
Lisa’s fingers are also starting to web together with the second knuckles all joined together.
“The skin has no elasticity. It looks and feels plasticky,” she said.
“Because of the disease I have so many problems, internal as well.
“If I didn’t have such lovely carers I couldn’t cope.”
Lisa said while most people’s outer layer of skin changes every 28 days, hers changes almost daily.
“Because my skin is so delicate, in my sleep I rip my skin off. Even if I don’t touch it, it breaks away by itself. And because of walking, the corns are embedded into my feet. It gets to the point where I’m walking like a 90 year old.”
She digs them out herself and even removes her own stitches.
“I dread the day when I can’t do it myself,” she said.
“At the moment I’m nice and stable. There are no complications. I haven’t had any extra major problems.”
Lisa said with all her many health problems, she manages to get through the hard times.
“You just deal with it. What else can you do? You just have to live with it as do other people with all their weird and wonderful diseases,” she said.
“But I’m lucky I have wonderful doctors and nurses and carers. That’s why I’m content.”
