Living with juvenile arthritis: ‘My 9-year-old woke up one morning and couldn’t walk’
Juvenile idiopathic arthritis affects about 3 million young people globally
It was a bright summer morning when Arjun first complained of foot pain. The nine-year-old’s ankle had an odd ball-shaped swelling that his parents thought was caused by a sprain. A visit to the paediatrician seemed to confirm their initial diagnosis and he was put on antibiotics to fight any infection, a topical ointment to reduce inflammation and a crepe bandage for support until it healed. Seven days on, the doctor was befuddled – the bulge remained.
X-rays didn’t seem to ring any alarm bells and just to be sure he went through a magnetic resonance imaging (MRI). Still nothing. Yet a blood test revealed elevated levels of C-reactive protein, which is produced by the liver in response to inflammation, and erythrocyte sedimentation rate, which measures how quickly your red blood cells settle at the bottom of a test tube; if it’s quicker than normal, it points to inflammation.
“So he said, ‘There’s a lot of infection. We just need to figure out what this infection is and where it is coming from’,” recalls Arjun’s mum, Sheetal Nair, in an interview with Gulf News. “So he changed the antibiotics and put him on another set of antibiotics for the next ten days. And this time, he put a cast on the right ankle. When he took off the last on the 10th day, it was still the same, except now it had become red.”
Parent and child and doctor sat in silence for a few minutes. The Dubai-based expat recalls, “I just looked at him and said, ‘I don’t know what’s going on so you tell me what’s going on.’ He said, ‘I don’t know what’s happening’ and then he asked me to go in for another blood test. And he asked me, ‘Is there anyone in the family who has arthritis?’”
This seemed like an odd question to Nair, who had only heard of the condition affecting older people. But, explains Dr Humeira Badsha, Consultant Rheumatologist and founding member of Middle East Arthritis Foundation, “Juvenile arthritis is a disease one is genetically predisposed to. Even if no one in your family has juvenile arthritis, you may be carrying the gene and something in the environment can trigger it. It can be a virus, bacteria or sometimes a hormonal change in the case of adolescent girls.”
Juvenile arthritis is a disease one is genetically predisposed to. Even if no one in your family has juvenile arthritis, you may be carrying the gene and something in the environment can trigger it. It can be a virus, bacteria or sometimes a hormonal change in the case of adolescent girls.
Arjun’s doctor explained that they would need to do another test, one that would check for an auto immune disease. The blood test – HLA-B27, which checks for a protein on the layer of white blood cells; the presence of which indicates an auto-immune condition – came back positive.
Arjun was diagnosed with juvenile idiopathic arthritis (JIA).
The condition is quite rare. Dr Badsha says: “According to [peer-reviewed journal] BMC, approximately three million children and young adults are estimated to suffer from JIA globally with prevalence rates consistently higher in girls.”
What is an auto immune disease?
US-based John Hopkins Medicine explains: “Autoimmune diseases happen when the body’s natural defence system can’t tell the difference between your own cells and foreign cells, causing the body to mistakenly attack normal cells. There are more than 80 types of autoimmune diseases that affect a wide range of body parts.”
Dr Badsha adds: “There are many patterns of involvement [when it comes to JIA], from predominantly spine, to just a few joints (oligoarticular) or multiple joints (polyarticular). It can affect anyone from a baby to an older child. It is usually accompanied by swelling, stiffness and inflammation of joints.”
“If your child is limping, has a persistent injury that doesn't go away or has swollen joints contact a doctor immediately.
“Some other signs are they feel very stiff when they wake up in the morning or they constantly get skin rashes and/or ulcers in their mouth. Digestive issues like diarrhoea or blood in their stool are also warnings as inflammatory bowel disease is common with arthritis.”
The doctor delivered the news and referred them to a few rheumatologists. Dr Badsha took on Arjun's case. “One of the first things she said was, ‘He’s going to be fine’,” says Nair, “And as a parent that’s something I really needed to hear.”
It was particularly comforting because JIA is a fast-progressing disease that works in a very particular way – if left untreated, it will present within a month on the other limb at the exact site of the affected area. In Arjun’s case, this meant that by July when he met Dr Badsha, his left ankle was swollen and he had to go to school in a wheelchair. “That was so heart-breaking to see,” says his mum.
The doctor asked her to trust the process – it might seem difficult; there were steroids and injections on the horizon; but it was necessary. Nair was resolved.
He was given steroid shots over the period of a month. Before week three was done, Arjun was on his feet and grinning. “’Look ma, there’s no pain,’ he said,” she laughs.
And the family experienced calm for the first time in a long time.
“By December he was much better. By February, she said he was 90 per cent better, she said she couldn’t see any inflammation, which was a miracle. Usually it takes a minimum of a year to be completely alright,” she says.
Tough conversations with other parents on social media support groups were all part of the process; Nair says, with most cases she came across of children suffering as hers did, she wanted to know what happened next. “I heard about cases about kids who are three years old and five years old, who had a similar problem but they were too small to even be treated with this kind of medication (biologics); I was just lucky that at least he’s old enough to be treated with it,” she says.
"Depending on the type of arthritis, symptoms show up at different ages," explains Dr Badsha. “There are some which occur between two and six years of age and there's another type, which appears in 6 to 13 year olds, and then there's the adolescence type. Juvenile arthritis conditions’ symptoms usually show up in children before the age of 16.
“Today, he’s completely okay; he’s got zero inflammation, which is seen on his ultrasound reports, which is close to a miracle for us.”
Arjun’s self-belief hasn’t faltered – his positivity alongside the medicines is what Nair credits for his speedy recovery. She says: “I hope [other] patients take [diagnosis] positively too, because that’s how you can get better - you need to take a positive approach and you need to be open to taking allopathic medication.”
Dr Badsha says, “Parents need to be aware that arthritis can affect children and look for early signs. Take them to see a radiologist if you suspect that they might be affected by juvenile arthritis.
“Secondly, if a child is diagnosed with juvenile arthritis, it is essential to schedule regular check-ups every three to six months with an ophthalmologist as there can be silent inflammation in the eye.”
She calls for a healthy lifestyle and plenty of vitamin D for young people.
Timely intervention is key
As in the case of Arjun, when dealing with JIA, time is of the essence. “For children, it's not advised to get second opinions or go to alternative practitioners because time is of the essence. They have to be on these immune-modulating medicines as soon as possible. These are paramount to prevent damage and to get control of the disease,” explains Dr Badsha.
“The patient needs medication for the immune system because these are autoimmune diseases — the medications can be anything from methotrexate to biological drugs. There are many new medicines to specifically treat juvenile arthritis. We have to treat children early and quite aggressively to prevent joint damage. The growth plates, also known as epiphyseal plates that are made of cartilage, are very near joints. So if the joint is damaged it can stunt overall growth or growth of one limb. It can result in one limb being shorter than the other if it's not treated on time.
“In terms of lifestyle changes, children should follow a regular exercise routine to keep the body moving and imbibe in physical therapy. We don't stress or dietary modifications for children other than avoiding the usual junk food. I never advise that children should stop eating gluten or dairy,” she says.
Another thing that can seem counter intuitive but really helps a child is sports. “Parents are always worried about their children playing sports. While very high impact contact sports like boxing and soccer should not be allowed, they can participate in other sports like swimming and tennis. This is not forever, while they have inflammation they should avoid contact sports, once the swelling has reduced, children should return to taking part in normal activities as any child does,” says Dr Badsha.
She adds: “Some types of arthritis disappear as the child grows older, like ones that only affect a few joints. If controlled right from the beginning, the child goes into remission, then they live a completely normal quality of life as they grow older. The key is to limit damage from a young age.
“Juvenile arthritis cannot affect lifespan unless left unchecked. If a person's arthritis or inflammation is left unchecked and causes deformities and disabilities then the lifespan will be shortened. But if the inflammation is controlled, deformity and disability can easily be prevented and it does not affect the lifespan.”
Arjun is back to normal – swimming, taking part in sports activities and generally being a happy kid. He says, “No matter where it spread I would still stand up for myself and fight it. I would still go to school.”
JIA is a rare, aggressive bully on the playground, but don’t worry, Arjun won’t back away from the fight.
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