Creating awareness of a debilitating disease

Still fighting... Nathalie Williams and Retha Viviers are determined to create awareness about myalgic encephalomyelitis.

Douglasdale resident, Nathalie Williams suffers from a disease called myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).

Retha Viviers, who founded the ME CFS Foundation South Africa, also suffers from this disease. The two are determined to focus on spreading the word on this illness in the Sandton area, rather than concentrating on the debilitating effects that they suffer on a daily basis.

Physiotherapist, Alexandra Bailey, said this syndrome has become more widely discussed among medical professionals. Bailey added that there was less of a stigma around this syndrome today and that many medical professionals were taking steps to research and treat it. She highlighted that a common side effect was a change in the functioning of muscles, severe abnormal exhaustion and cannot function normally.

Williams had to leave her job in IT, sell her house and move back in with her mother.

Viviers said, “Because of this disease, I battle to take care of my own children. I often wonder who will look after my precious 16-year-old daughter if something were to happen to me.”

Both Viviers and Williams are sharing their stories for two reasons. Firstly, they want to create awareness and, secondly, they want those who suffer from this disease to know that they are not alone. To accomplish this, Viviers has set up a Facebook page and website so that those suffering from the disease can feel that they are part of a community. She remembers feeling very desperate and alone at one stage after her diagnosis and does not want anyone else to go through this.

The two women are urging sufferers in the Sandton area, and all over the country, to come forward and be part of a community that wants to work together to create awareness of this disease.


Pascale Michael

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