‘I was told I wouldn’t live past the age of 12 because of juvenile polyarthritis’

Nhlanhla Ntuli (Photos: Supplied)
Nhlanhla Ntuli (Photos: Supplied)

Nhlanhla Ntuli from Witbank, Mpumalanga, was only six years old when she was diagnosed with juvenile polyarthritis. Doctors told her mom she wouldn’t live to see her 12th birthday.

It’s been 18 years since her diagnosis with the type of arthritis that caused her hands to be deformed.

Speaking to YOU magazine, the 24-year-old revealed how she’s continued to grow from strength to strength through the years, despite being informed by doctors she wouldn’t make it into adulthood.

“My mom says that I was born a normal healthy baby, and growing up I had no complications or any visible signs of arthritis,” Nhlanhla said.

“But when I was six my mother started noticing that my hands were swelling up, and that’s when she took me to the doctor.”

Nhlanhla and her mom went to various doctors. Some specialists didn’t detect the polyarthritis in the beginning. Some misdiagnosed it as HIV and others told her mother to use drastic measures to straighten out her deforming hands.

“One doctor told my mother she should instruct me to put my hands on the floor and she should step on them with her feet to straighten [out the deformity],” she recalled.

Despite seeing many medical practitioners without any helpful advice, Nhlanhla and her mother never lost hope.

“Eventually we were informed by a doctor that I had polyarthritis.

“He also said there was nothing they could do for me and that my mother should brace herself because I wouldn’t live past the age of 12 because of its severity over the years,” she said.

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According to WebMD, juvenile polyarthritis is a disease that causes swelling in the joints in children younger than 16 and is an autoimmune disease. The polyarthritis affected Nhlanhla’s hands severely.

“When I was in school I had low self-esteem and lacked confidence because the school children would sometimes stare and call me nasty names.

“I’d wear my school blazer all the time just to hide my hands at all times to prevent the stares.

“While I’ve learned to live with arthritis throughout the years, it’s also been a difficult journey,” Nhlanhla said.

“There were those around me who accepted me for who I was growing up. But then there were those who didn’t want to get close to me and treated me like what I had was contagious.”

(Photo: Supplied/Nhlanhla Ntuli)
When Nhlanhla was in school she would hide her hands (Photo: Supplied/Nhlanhla Ntuli)

Her mother, Mapule Mampane, encouraged her to grow her faith in God.

“When Nhlanhla was first diagnosed with polyarthritis, as any parent would be, I was really heartbroken but I also begged God to be my solution,” said Mapule.

While Nhlanhla is on medication that assists her with easing the severity of arthritis, the pain in her joints does sometimes become unbearable, especially in winter.

“There’s nothing that I can’t do but sometimes I find it difficult to stretch in the mornings or wash my own back but my mom is always there to help me,” said Nhlanhla.

“There was a time when my mom sat me down and she said I need to stop hiding my hands and allow those around me to get used to who I am.”

“In the beginning, it was really hard to accept myself. I’d even pose in a particular way just to hide my hands. But eventually I was comfortable enough to show the rest of the world my true self.”

The young woman has now found the strength to encourage those around her with similar conditions or diseases.

“I really don’t like it when people stare and feel pity for me. Don’t do that, I’m just like you and don’t do that to the next person either because you don’t know how much pain you’re causing,” she said.

“To people who are differently abled or have family members who are, just show them unconditional love and don’t ‘other’ them . . . This only makes it harder for them to integrate with society.”

Mapule advises parents to always support their children who have special needs and to not lose hope.

“Pray for your children at all times and take note of their behaviours and the way they act – sometimes [they may exhibit symptoms of depression which] comes from a place of pain,” she added.

“I always say that Nhlanhla is the younger version of me and I love her so much. I wouldn’t trade her for anything in the world. To all parents out there, just love your children.”

(Photo: Supplied/Nhlanhla Ntuli)
Nhlanhla Ntuli (Photo: Supplied/Nhlanhla Ntuli)
 (Photo: Supplied/Nhlanhla Ntuli)
Nhlanhla and her mom Mapule (Photo: Supplied/Nhlanhla Ntuli)

Additional sources: WebMD

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