Invisible “neuro” illness

Kherie Stievenart, a 31-year-old Ballito resident who moved down from Johannesburg with her mother Melanie a month ago, suffers from a rare and often misunderstood medical condition.

Stievenart was diagnosed with fibromyalgia by a rheumatologist in Johannesburg 11 years ago and has, alongside her mother, been searching for answers to her condition ever since.

Fibromyalgia, also known as chronic fatigue syndrome, is a debilitating hereditary auto-immune condition with varying symptoms including muscular and vascular swelling, acute aching pain on the skin, daily migraines and irritable bowel syndrome (IBS).

The condition also prevents the sufferer from achieving restorative sleep, which is essential for providing both the mind and the body with sufficient energy for the day.

This means that fibromyalgia sufferers are forced to live a hermit’s life, unable to perform many everyday tasks causing many people with this condition to develop depression to add to their problems.

Stievenart said she has had “headaches daily for the past 15 years” and is constantly exhausted.

“It makes you feel like an old person in a young person’s body,” said Stievenart.

“Loud sounds, bright lights and temperature changes – even a strong wind – also bring on the migraines.”

This “invisible illness” as the Stievenarts call it, is sadly very hard for doctors to diagnose and for non-sufferers to understand.

As a result, the illness is steeped in controversy due to the fact that doctors recognise the symptoms sufferers complain of as part of other conditions, and prescribe medications accordingly.

Naturally patients often experience negative reactions to these medications, or build up a resistance to them, making them effectively useless over time.

Stievenart’s mother, Melanie ran a support group for fibromyalgia sufferers in Johannesburg and would like to reach out to other people battling the same symptoms as her daughter.

For enquiries or more information, contact Melanie Stievenart on 076 449 0771.