Ibtesaam Basier looks grateful. But her sparkling, smiling eyes are deceiving. At just 15 years old she’s chained to a wheelchair. Her fingers are so swollen she can’t practise the writing she once loved. Her hands and feet are similarly bloated. She can’t turn her head because of excruciating pain in her neck.
Basier appears intelligent. But all she’s now able to do by herself is eat and brush her teeth. Her relatives have to assist her to use the toilet, to bath and to dress.
In the afternoon, when she returns from school, after a member of her family has carried her inside, her wheelchair is abandoned at the door. The two-bedroom apartment, where she, her mother, uncle and three siblings live, is too small to allow the presence of the only piece of equipment that makes it possible for her to move around independently.
She no longer warms herself in the sun in the dust outside her family’s home in Plumstead, Cape Town. That’s because of the recent arrival of a new family in the area, who’ve brought with them some children whose primary entertainment is to make “sick fun” of Ibtesaam, said the teenager’s mother, Fahiema Basier.
“They laugh and say she can’t walk because someone has raped her,” Fahiema said. The mother chokes back tears and whispers: “Actually, they say much worse than that. They say things to my daughter that I don’t want to repeat.”
Perhaps it’s not surprising that she is a quiet child. But four years ago, said Fahiema, she was youthful exuberance personified. “Her favourite sport was netball. You should have seen her, running around and shouting and jumping.”
Now most of Basier’s time away from school is spent waiting. Her name is on a long list of people requiring urgent bilateral hip and knee replacements. The operations are the girl’s only hope of ever walking again.
One morning when Basier was 10 she awoke with pain in her knees and ankles. She said: “My feet were so swollen they couldn’t fit into my school shoes.”
Her mother took her to a private doctor who suggested the cause of the child’s affliction was the early onset of menstruation. But Basier’s condition worsened and the doctor eventually referred her to the Red Cross Children’s Hospital in Cape Town, where she was diagnosed with paediatric arthritis. The condition affects one out of every 1 000 children in South Africa. Fahiema said: “I was shocked; I didn’t know kids could suffer from this. I mean, it’s an old person’s disease.”
But soon she and Basier met many other youngsters with paediatric arthritis at a clinic at Groote Schuur Hospital. The condition, also known as juvenile idiopathic arthritis, is characterised by persistent joint inflammation. “Idiopathic” means the cause of the disease is unknown and “juvenile”, in this case, indicates that the symptoms manifest before 16 years of age.
The immune system
“Arthritis is a disease of the immune system, or that part of the body that fights infections and normally keeps us healthy,” said Chris Scott, one of only five paediatric rheumatologists in South Africa. “For unknown reasons, sometimes the immune system starts to attack, rather than protect, the body. With arthritis, the immune system attacks the joints and causes synovitis, or inflammation of the lining of the joints,” he said.
Synovitis is the hallmark of arthritis and, if persistent, leads to joint damage.
“In Basier’s case almost all her joints are affected and all initial treatments failed,” Scott said. “In the process lots of bone was eroded and her joints were almost completely destroyed, to the extent that there is no hope for spontaneous recovery.”
Arthritis can be so severe in children that even the vocal chords and inner-ear bones are affected and eyesight can also deteriorate.
But Basier doesn’t want pity. “She never complains. She’s my bravest patient,” said Scott.
The teenager demonstrates a maturity far beyond her age. “I must accept this condition; there’s nothing I can do about it,” she said, before adding softly: “Maybe God’s testing me to see how much I can handle — I’m in less pain now. It used to be worse. I’m thankful for that.”
Basier takes medicine called “biologics”. They target key molecules in the immune system. Biologic agents are expensive and can cost up to R10 000 a month. Medical schemes are reluctant to pay for them and in the state sector few have been approved for treatment.
Basier is part of a small group of patients at the Groote Schuur clinic for which the pharmaceutical company Pfizer has donated a three-year supply of biologics.
Nine-year-old Unam Gwija from Muizenberg has been using a biologic called a TNF inhibitor for seven months. TNF inhibitors decrease inflammation.
Injections
Twice a week Gwija injects herself with this drug. “It’s too expensive to come to the hospital so many times so they’ve taught me how to do it myself,” she said.
Scott said: “She’s so good at it that we use her to teach the other children how to inject themselves.”
On a recent morning, however, Gwija also had to bear one of the most painful injections Scott administers — a steroid preparation directly into her ankle to treat the pain and swelling, the effect of which lasts for a long time.
She clutched both of Scott’s assistant’s hands, squeezed her eyes closed, then quickly peeped to watch the doctor clean her ankle. “Most children don’t tolerate these injections well because of the hurting,” Scott said. As he injected the needle into the middle of the girl’s ankle, he said: “Think of something nice, think of your art.” Gwija concentrated on exhaling slowly and loudly through her mouth and nose.
(Recently, she participated in an international arts competition in Belgium for children with arthritis. She drew a picture of township houses. Outside the houses, children jumped in the air as they played with balls.)
When the injection was over, Gwija opened her eyes, clapped her hands and watched Scott put a plaster on her ankle. She endures this pain once a month. “It makes me feel better,” she said. “It’s less painful than the pain I experience without the injection.”
According to Scott, most cases of paediatric arthritis manifest themselves when children are three or when they are between 10 and 11. Medical experts have yet to establish the reasons for this.
But Scott said the earlier a child is treated, the better the chances for recovery — up to 70% of his patients, who number more than 100, go into remission when they’re on treatment.
But some never outgrow the condition and have to take medication for the rest of their lives.
Treatment usually starts with a weekly dose of a cancer drug, methotrexate. It’s cheap, at about R30 for a month’s supply, and easy to take. Methotrexate is often used in combination with a biologic agent.
“Biologics may be expensive, but the cost pales into insignificance when compared with the price of hip and knee replacements, particularly at such a young age when the procedure may not last for rest of someone’s life,” Scott said.
Challenges and trauma
The trauma that children with arthritis experience at school is immense. When Basier had to start high school this year, her mother spent two months trying to find an institution that was willing to accommodate her. “The schools for mentally disabled children didn’t want to take her because there was nothing wrong with her brain and the so-called normal schools didn’t have escalators that she could use to get to her classes when the other children took the stairs,” her mother said. Eventually, Bergvliet High in Cape Town accommodated her. It was the only school with a lift. Basier received a significant reduction in school fees. Otherwise, her mother said, “we would never have been able to afford for her to go there”.
But it meant Basier’s uncle had to give up his job to push her to school and back in her wheelchair every morning and afternoon, a task that takes more than two hours. Initially, when it rained, she didn’t attend school. But the Chaeli Campaign, which helps disabled children in mainstream schools, recently began transporting Basier to school. She also received a motorised wheelchair.
“They have a bus in which my wheelchair fits and, thanks to them, I now never miss school,” she said.
Fourteen-year-old Sinethemba Ntshuntshe’s mother remembers the exact date on which her son was diagnosed with arthritis: at the age of five on July 16 2002. He was initially hospitalised for three months. She carried him on her back until he was 10 because he found walking too painful. “I had to dress him, shower him, do everything for him,” his mother said. “He’d often be fine in the morning and go to school. But then the pain would hit him and they’d phone me to come and fetch him. I had no choice but to take a huge blanket, put him on my back and carry him home,” the domestic worker from Khayelitsha said.
However, when Ntshuntshe was put on methotrexate three years ago, his life changed. Doctors taught his mom how to inject him with the drug and, after a few months, he could walk again.
“He’s gone into remission, which means that the medicine helped his immune system to no longer attack his joints,” Scott said. “He’s been off medication for 18 months now and visits us only for a check-up once every six months.”
Ntshuntshe, who could hardly walk for five years, is now a talented midfielder in his school’s under-14 soccer team. “It’s great, I never thought I’d be able to walk again, let alone play sports. I’m finally normal again.” he said.
Back in Plumstead, Basier has not been as fortunate. But she and her mother have not lost hope.
“I think I’ll walk again. I don’t know why, but I just believe that,” Basier said, running her fingers through her hair. Her mother puts her hand firmly on her daughter’s left leg and looks her in the eyes. “We have to have faith. And we have to pray. Then things will change for us,” she said.
Learn more about paediatric arthritis
What should you look out for?
If your child complains of swollen, painful ankles, feet or hands or early morning stiffness and it continues for six weeks or longer, he or she may suffer from paediatric arthritis. Children who have not started to walk by the age of three sometimes suffer from this condition.
Is it hereditary?
No. It cannot be transmitted directly from parents to their children. However, there are some genetic factors that increase the chance of developing the disease. It is rare to find two children affected in the same family.
Diagnosis and treatment
There are only five paediatric rheumatologists in the country and they’re in Cape Town, Johannesburg and Durban. Non-specialists often diagnose the condition wrongly. If left untreated, the child’s joints can become permanently damaged and certain subtypes can cause serious harm to the eyes. Treatment is based mainly on drugs that inhibit inflammation and procedures that preserve joint function and prevent deformities.
For information, contact the Arthritis Foundation on 0861 30 30 30 or www.arthritis.org.za
Mia Malan works for the Discovery Health Journalism Centre at Rhodes University