Woman home-bound by invisible disease

Retha Viviers (left) and Leigh-Ann Horn live with ME/CFS, a disease which causes chronic fatigue and depletion of energy.

Leigh-Ann Horn was a podiatrist in Benoni for 18 years, but she sold her practice after the onset of Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS), also known as ME/CFS.

She has lived with the disease for the past 15 years, being forced to stay at home on most days, due to a lack of energy.

Sufferers feel exhausted most of the time and often can’t function for more than three hours at a time, without sleep.

Additionally, people with the disease can’t perform physically straining activities, crashing quickly after doing something mundane, such as running a few metres too far or walking in a swimming pool for a few minutes too long.

Sleep often doesn’t help and stress makes the disease worse.

The Morehill resident worked with the early symptoms of the disease for several years, but eventually couldn’t anymore.

“I started getting temporal brain seizures, but continued with work, which worsened the situation,” Horn said.

“I reduced my workdays, but that didn’t do much to help.

“I developed a tick in my hand and I was a doctor, meaning I could cut my patients if I had continued working.”

Horn visited as many as 20 medical and psychiatric professionals, none of whom could help, until she found one doctor who diagnosed her.

Horn also found support in a Facebook group for ME/CFS sufferers, started by a Randburg-based foundation.

Retha Viviers, who has lived with the syndrome for the past 13 years, started The ME CFS Foundation South Africa to help raise awareness of ME and CFS in South Africa.

Despite her disability, Viviers, along with her daughter Clarinda, run the foundation and hope to take it nationwide.

“Thanks to the Internet I am able to work in between my recharge sessions and together with my partners will be able to run the foundation,” said Viviers.

Clarinda said her mother used to be a “classic, hard working single mom”.

“Then she started getting weird symptoms: she became sensitive to smell and light, started becoming more tired and eventually she had to leave her work.”

Horn and Viviers agreed they can’t handle a number of everyday things, such as caffeine.

“There is no room for impulse, you can’t go to the mall, because you have severe sensory intolerance, or it would be too tiring,” said Horn.

“When I and my husband go to the cinemas, I watch it with sunglasses and earplugs, otherwise it’s too much.”

The three agreed that awareness of ME/CFS has come a long way in the past 20 years, but there is still much to be done.

“People think it will pass and continue working, but if you push through, it worsens,” said Clarinda.

“My dad is very understanding, he does a lot for my mom now but it took a long time for him to get there.”

The trio said many people become ostracised and lose their families or partners.

About six years after the onset of the disease, Horn was divorced, saying: “My first husband could not cope with ‘my absence’ in the marriage.”

“I have recently remarried and my husband has helped restore a lot of faith in humanity with his unconditional love.”

As there are no specific tests to diagnose ME yet, and due to a lack of understanding, the syndrome is often still regarded as a “faker’s disease”.

Horn and Viviers said some prescriptions work for some people, but not for others and noted there is no cure yet.

“In 2005, a woman in Roodepoort was the first in South Africa, whose cause of death was classified as ME,” said Viviers.

The difference between ME and CFS is the effect on the brain.

ME is when CFS has progressed far enough and has caused inflammation to parts of the brain and spinal cord.

This can cause occasional seizures, as in Horn’s case.

There is a stigma attached to the disease, where people think sufferers can sleep to take care of the exhaustion, but it hardly ever helps.

The women said many sufferers can’t sleep properly at night, even though they are constantly tired.

“It’s a bone-crushing exhaustion,” said Horn.

“I have started adapting to my new identity and do find a slower pace of life and the decrease in stress has significantly improved my well-being.”

Viviers explained the disease as being very debilitating and hopes to involve South African doctors, to help build up statistics of ME in the country.

“It is believed that thousands of patients across South Africa still need to be diagnosed and given access to some form of basic treatment and advice on how to live with the illness,” Viviers said.

She said the foundation is in desperate need of funds, which will be used to raise awareness of ME and to help patients who cannot the loss of income caused by the disease.

“Our long-term plan is to have specific ME/CFS clinics opened in SA,” said Viviers.

The foundation, which is a registered non-profit organisation can be reached at [email protected] or [email protected]

Also read:

Some of disease’s symptoms include:

· Fatigue

· Post-exertional fatigue

· Sleep dysfunction

· Pain

· Neurological manifestations

  AUTHOR
Erik van Dijk
Journalist

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