Sara jumps on a trampoline in her yard, spreading her legs in the air to do the splits and clenching her hands into fists like a cheerleader. The 12-year-old is petite, wears glasses, has long wavy hair and cheerleading is her passion. “I love sports,” she says. She has modern medicine to thank for being able to be so active. Because she has rheumatism.
“When Sara was about six months old, she slipped off my diaper so strangely and then she had a fat finger,” remembers Sara’s mother Manizha Wodud, who lives in Berlin. Those were the first signs of rheumatism back then, but the pediatrician didn’t immediately notice it. “Her finger was fat for six weeks.” It was only months and a few doctors later that the family received the diagnosis: Juvenile idiopathic arthritis (JIA) – a form of childhood rheumatism.
Pediatric rheumatism: numbers and facts
Pediatric rheumatism is a chronic autoimmune disease. The immune system therefore attacks its own body. This causes inflammation, usually in joints, which occurs in episodes. In addition, bones, muscles and eyes can also be affected. Rheumatism cannot be cured, but the symptoms can often be treated well with targeted therapies.
“JIA accounts for the lion’s share of rheumatic diseases in children,” says pediatric rheumatologist Daniel Haselbusch from the Helios Clinic in Berlin-Buch ahead of World Rheumatism Day on October 12th.
The classic forms of rheumatism in children also include collagen vascular diseases (connective tissue diseases), vasculitis (chronic vascular inflammation) and the group of autoinflammatory diseases (periodic fever syndromes), as Kirsten Minden from the Charité University Medicine in Berlin says.
It is difficult to say how many children and young people in Germany are suffering from rheumatism because there is no obligation to report it, says Minden. Based on available billing data and population-based studies, it is assumed that around 14,000 people in this country are affected. “Around 1,500 adolescents are newly diagnosed with JIA every year.”
The difference between adults and children
Articular rheumatism in childhood has similarities but also significant differences to the disease in adulthood, says Minden. For example, it is much more difficult to recognize in children. “There is no diagnostic marker for any of the forms of rheumatism in children,” explains the Charité doctor.
Symptoms are often much less noticeable in children, says Haselbusch. This includes constant tiredness and the children can also be irritable or unfocused.
Sara also cried a lot as a baby, as her mother says. “Whenever I put her socks on, she screamed so much. I thought she was just a screaming child and sensitive.”
The story of the Wodud family
Manizha Wodud works full-time and raises Sara and her 14-year-old sister alone. She remembers difficult phases: “There was a time when the older one had to do her homework with doctors in the waiting room.” Once an attack had a severe effect on Sara’s eyes. “My mother was sitting in front of the daycare because I was at work and Sara had to get eye drops every hour.”
According to Haselbusch, around 15 percent of children with JIA develop eye inflammation. “It’s treacherous in that it’s not visible from the outside.” The children do not have red eyes or pain and are usually too young to communicate well that something is wrong.
How often flare-ups occur cannot be accurately quantified, says Haselbusch. “There are children who don’t have an attack for two years and there are children who have one every two months. That shouldn’t be the case because then it’s clear that the therapy isn’t intensive enough.”
How to help the children
The treatment options are varied these days. They start with anti-inflammatory non-steroidal medications such as ibuprofen and naproxen, explains pediatric rheumatologist Haselbusch. “The second step is usually steroids.” These are usually injected directly into the joint under general anesthesia. There are also medications like Sara’s that suppress the immune system and that those affected have to take for at least a year and a half. Nowadays there are also new types of medication on the market, some of which are individually tailored to the child and are very complex to produce.
“I don’t know any children today who are newly diagnosed with rheumatism and therefore end up in a wheelchair. But things were certainly different in the 1990s, which we have to thank for the new therapies,” says Haselbusch. Around 40 percent of children could remain symptom-free as adults.
Even though Sara’s rheumatism is still acute and the attacks keep coming back, she is active, enjoys going to school and cheerleading – here she is very successful with her team. “We qualified for the World Championships in America,” she says with sparkling eyes. They will then go to Orlando in spring 2024.
