EVERY DAY IS A STRUGGLE

Ilze had to give up work after being diagnosed with a painful and incurable condition that causes the skin to harden

- PIETER VAN ZYL

THE words of a Lionel Richie song drift cheerily through from the kitchen: “Oh what a feeling, when you’re dancing on the ceiling.” It’s an upbeat, celebration-ofgood-times song and she can’t help chuckling.

For Ilze Groenewald, dancing is a distant dream, a memory from another life when pain and stiffness weren’t her constant companion.

Acts as simple as opening a bottle of water or buttering a slice of bread are practically impossible and she can barely do anything for herself.

Ilze (49) has scleroderma, a rare autoimmune disease that causes hardening of the skin and affects the internal organs. Pain relief is the only option for patients with the condition – there is no cure.

“I survived Covid twice,” Ilze tells us from her parents’ home in Paarl, where she lives with her daughter.

“That was bad but this condition dominates my life. I wouldn’t be able to cope if it weren’t for my parents and my daughter.”

Until December she worked in a doctor’s surgery in the Boland town but her hands became so crippled she couldn’t even manage the filing.

The disease also pulls the skin on her face tight. Her nostrils are almost closed and her lips have started to curl away from her teeth.

Patients coming into the surgery used to stare at her, she says.

“I’d ask them, ‘Can I tell you what’s wrong with me?’ I’d rather people asked instead of just staring.”