Shoes for a syndrome

Nathalie WIlliams and Retha Viviers spread the word about a debilitating condition.

 

On 27 September, residents are encouraged to put out a pair of shoes to remember the sufferers of myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).

In the article, It’s all about ME, Week ending 6 May, Douglasdale resident, Nathalie Williams, explained her harrowing experiences with this debilitating disease and said she was determined to create awareness and encourage other Sandton residents to become involved on 27 September.

Retha Viviers, who is a member of the ME/CFS Foundation South Africa and Williams’ friend said, “The disease is a complex multi-system disease that causes significant immune, neurological and autonomic abnormalities. It has one of the lowest quality of life scores of any disease and is sometimes referred to as chronic fatigue syndrome, but is far different from normal tiredness. It is estimated that about 20 million people suffer from the condition, worldwide and thousands of South Africans have not yet been diagnosed,” said Viviers.

The initiative in September is referred to as the #MillionsMissing Worldwide Initiative. Viviers explained, ”This is the second round of the International campaign where people worldwide set out pairs of shoes in open spaces in their cities to symbolise people who cannot participate in life because of ME/CFS.

”However, due to the nature of the illness many patients take photos of the shoes they can no longer wear and participate virtually. South Africa’s participation is done virtually and we do not gather in a particular place, yet,” she said.

One particular South African, who has reached out to Viviers and is going to put out a pair of shoes has chosen only to be referred to as Nkele to protect her privacy. She said, “I had to stop studying when I was diagnosed. I was a bright woman and completed my first year and a half of actuarial science but due to my illness, I was forced to change to an easier degree. However, I deteriorated and had to take leave for a semester,” she said.

”I went back this year [2016] but had to take another leave of absence for the rest of this year. ME/CFS is a cruel illness. I miss my studies and also had to say goodbye to my dream of being and actuary,” said Nkele

Viviers encourages all sufferers to reach out to her and residents, who suffer from the illness, can send a picture of their shoes and an anonymous testimonial to her.

Details: Retha, mecfssafoundation@gmail.com

  AUTHOR
Pascale Michael
Journalist

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