A whole new world

By Danielle Galvin
GETTING dressed over painfully-tight bandages, taking handfuls of medication and finding the strength for a sip of water are just some of what Lisa Barnes faces each day.
The Bunyip woman has a debilitating skin disorder that dictates her every move, prohibiting her from feeling the sun’s rays on her face, driving a car to the local supermarket and enjoying a meal.
But the 40-year-old considers herself fortunate and she’s just been given a lifeline to the outside world.
“I feel like I won Tattslotto after I got my new computer,” she said.
Southern Health organised funding for a new Mac computer. Ms Barnes navigates her favourite sites, from funny YouTube videos of sloths and survey websites that she takes part in.
Speaking to the Gazette from her Bunyip home, Ms Barnes said she’s limited in what she can do each day. She has to avoid sunlight and is fed through a PEG tube in her stomach.
But that won’t stop her from seeing the world thanks to her new computer.
“I can’t go out very often, I’m very limited. It’s hard to get to places and speak to people. This computer is a miracle!”
The rare skin condition, called epidermolysis bullosa, means it’s easy for Ms Barnes to feel isolated and alone.
But the chatty and lively woman is ecstatic that she can talk to her friends online.
“Being able to go online everyday stimulates my mind otherwise I’d just be sitting here in my home with nothing to do,” she said.
“Now I’ve got access to everyone, I feel connected and can communicate with my friends.”
It’s unusual for her to have a day where she’s not in pain and she jokes that her condition is a “ripsnorter”.
Her skin flakes and it’s sensitive to touch. No amount of moisturiser can rub away the eczema and the painful blisters that look like open wounds on her skin.
“It’s a degenerative disorder. Some days I can’t get out of bed and I can’t take all of my meds without the help of my carers,” she said.
Her doctors tell her it is a matter of time before she gets cancer and she may be the only adult in Victoria with the condition as severe as she has it.
In spite of the difficulties, and the reality of her condition, Ms Barnes said she still considers herself to be very fortunate.
“Not just because I have friends and family, but because I have all of the help I need,” she said.