Defying the odds

2018-10-18 14:56
The World Arthritis Awareness Day event at Groote Schuur Hospital was attended by, from left, Vuyelwa Ndunduzela, Lorraine Mantini, Julie Martin, Margie Phillips, Dr AbdelGaffar Mohammed, Mary Nkosi, William Martin and Ann Olivier. Photo: Luvuyo Mjekula

The World Arthritis Awareness Day event at Groote Schuur Hospital was attended by, from left, Vuyelwa Ndunduzela, Lorraine Mantini, Julie Martin, Margie Phillips, Dr AbdelGaffar Mohammed, Mary Nkosi, William Martin and Ann Olivier. Photo: Luvuyo Mjekula

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A 60-year-old arthritis patient has recounted how she battled the condition from the age of six, enduring pain and stigma, and torment by her peers.
Mary Nkosi was speaking during a World Arthritis Awareness Day event at Groote Schuur Hospital last week.

The Arthritis Foundation of South Africa organised the informative event on Wednesday 10 October, which was also attended by health practitioners and arthritis survivors.

At a very young age, Nkosi was diagnosed with rheumatoid arthritis, a long-term autoimmune disorder that primarily affects the joints.

Speaking after a doctor and nurse had given details of the different types of arthritis, Nkosi said: “Mine is the worst. I’ve seen pain all my life, I’m used to it. It is my friend.”

Born in Gugulethu, she recalled her early struggles while living in Swaziland with her grandmother and cousins.

“I didn’t know that I was different, I only discovered when I was between eight and 10 years that I had deformed feet,” she told the gathering in the hospital’s Kleinschuur room.

“But there was nothing I couldn’t do. I could swim in a deep river. We always went to the bushes to pick up wild fruits. When it was raining we would hide under a big stone which was built like a house.

“We would make a fire with my cousin and braai fresh maize and dry peanuts. But sometimes I had days when children would tease me, calling me names, and I would cry, asking myself: ‘Why am I like this?’ I had no shoes on my feet and my feet were becoming worse with bones on top of my toes.

“I couldn’t put any shoes on and I was not at school. My granny could not take me to the hospital because it was too far. So my sickness got worse – I developed black and white spots on my hands and feet,” Nkosi told the emotional crowd.

In 1968, she remembered, she and her siblings moved to an area known as Manzini.

“We rode on a bus to town. After that we walked. I still remember the pain I had in my legs and feet without shoes – the stones were sharp like thorns. I couldn’t take it anymore. My granny and I sat down to rest a bit and we started walking again until we reached our destination – the place was called Ngwane Park Township. At least it was a nice house with three bedrooms.”
Nkosi picked up that the children in the township attended school and she was happy when her grandmother and a neighbour found her and her sister a school. The school was quite a distance away and she had to walk barefoot.

“On our way to school I had to borrow another kid’s shoes because it was painful to walk barefoot. She would give me her shoes but before we reached school she would take back her shoes and I would be on my feet again. At school there was no house, we used to sit under a tree on top of stones. The teacher would teach us and we would write on slates but I was so brilliant I would get 10 over 10 every day.

“When I was in Grade 1 I could read a Standard Four Zulu book. My older sister used to teach us at home how to read and write. The following year I went to another school. I was in the Grade 2 class only for two weeks and then they promoted me to Grade 3 because I was very brilliant,” she said, to applause.

In 1976 and 1977 she had operations on her feet. “Then it was much better, I could now put on my shoes but as I grew older, the arthritis became worse and my hands became deformed also but there was nothing I could not do.
“I went to the vocational training college where I learnt handwork, sewing, beading, knitting, crocheting and cooking,” said Nkosi.

She now makes her own clothes and stresses that she lives a normal life.

She gave advice to those diagnosed with the disease: “Please don’t give up. Tell yourself you are not disabled and you are able to think with your head and work with your hands. Have confidence in yourself. Treat yourself as a normal person. God has given you eyes, ears and brains, so there is nothing wrong with you.”

Dr AbdelGaffar Mohammed explained that it is important for patients to religiously take their medication and be informed, also about side effects.

Rheumatology nurse Margie Phillips said she plays the role of counsellor to the patients she sees because providing them with information and listening to their struggles helps them to better deal with the disease.

She also stated that arthritis is “not an old-age disease” but affects people of all ages. Phillips said a lot of young people are becoming patients.
She said although it cannot be cured, the disease can be controlled. She told patients to go to the clinic and ask questions and even join support groups. Exercises that can help patients include stretching their joints and taking a walk around the block.

“It is now in your hands. You have the power to do something about it,” said Phillips.

Patient Reginald Kaliyati, who suffers from scleroderma and lupus, said a lack of understanding and information leads to society displaying a negative attitude towards arthritis and its sufferers. Despite the disease, Kaliyati, a qualified electrician, is able to work and has a job.

Contact the Arthritis Foundation of South Africa helpline on 0861 30 30 30 or 021 425 2344 or visit www.arthritis.org.za or on Facebook: ArthritisSouthAfrica


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