I AM NOT MY SKIN

Shirvani Naran is on a mission to raise awareness about her painful condition

- SIPHOKAZI ZAMA

DON'T get too attached. These were the words D's doctors told her parents soon after she was born.

Her skin was peeling and covered in blisters and the risk of complications such as deadly infection was so severe she wasn't expected to live past six months.

But Shirvani Naran is now 35 and although every day is a challenge, she's learnt to live with her chronic form of epidermolysis bullosa (EB), a group of rare inherited skin disorders that cause the skin to become extremely fragile. Her disorder also causes blisters inside her throat, "so something as simple as drinking water can blister it", she tells YOU.

Tough though it is, Shirvani refuses to allow her condition to rule her life. She lives with her husband, Shimal (36), a business analyst, and three children in Cresta, Johannesburg and her family help her navigate life's daily tasks.

"I struggle with opening bottles and jars, locking and unlocking doors, and opening taps," she says. "Using scissors and knives is difficult. Abrasive surfaces hurt me and I use my teeth to open lids."

Out in public, she's used to people staring, especially at her hands, which resemble those of a burn victim. "When I'm paying for my groceries, cashiers don't know if they should take my card from me. I've had some throw the money at me or just drop it on the counter," she says.

"I've also had people shout at me for parking in disabled bays. But my toes have webbed together, so I can't walk far or stand for too long.

Shirvani isn't shy to talk about her skin condition - in fact, she welcomes it. "If I'm in a queue and somebody asks what happened, I'll tell them. If I keep quiet, nobody is going to know about it," she says.