Dubai: Life is a challenge for Dubai-based resident Katrina Thornely who was diagnosed with a form of juvenile arthritis (JA) when she was one year old, and now as a mother to seven-month-old Oscar.
Thornely told Gulf News that she has undergone six surgeries for various joints including a wrist fusion surgery leaving her unable to bend her wrists and a facial surgery to correct a jaw deformity. As a baby, she wore leg braces and suffered being bullied as school.
According to the Centres for Disease Control and Prevention (CDC), juvenile arthritis occurs in people younger than 16 years. There are a number of different clinical case definitions for childhood arthritis however the most common form of juvenile arthritis is juvenile rheumatoid arthritis (JRA).
In the UAE, the incidence of juvenile arthritis is not as high as it is in the West, said Dr Deepak Bhatia, senior consultant orthopaedic surgeon, Al Zahra Hospital and Al Zahra Medical Centre Dubai, UAE, speaking to Gulf News.
He explained that the term juvenile idiopathic (arising from an unknown cause) arthritis (JIA) is a broad term under which several types of arthritis involving long-term joint inflammation are listed. “To diagnose, we look at physical findings, medical history, and study symptoms like limping, reduced activity level, joint swelling, and difficulty with fine motor activities among others,” he said.
The overall treatment is catered towards controlling symptoms, preventing joint damage and maintaining function, he explained. “The primary treatments include medication and a host of new generation anti-inflammatory drugs that have minimum side effects. Surgery is offered to patients when all non-operative options have failed. With the availability of state-of-the-art implants, those suffering from juvenile arthritis can be assured of excellent results, helping them return to optimum function,” said Dr Bhatia
Thornely is the patient services director at the Emirates Arthritis Foundation (EAF), Dubai where she has been volunteering for the past four years, and a marketing professional in the hotel industry. She hopes her personal story will encourage others suffering from the disease to share their experiences.
She said, “It can be difficult looking after Oscar. I couldn’t cradle his head due to my stiff wrists while bathing him and I might not be able run around him as he grows or hang with him from monkey bars. But I have learnt to manage.”
Another issue she spoke about was misdiagnoses. “One of the symptoms of juvenile arthritis is persistent fever. Many doctors don’t go beyond this diagnoses, delaying treatment,” she said.
Another parent spoke to Gulf News on grounds of anonymity about her three-year-old daughter Sara who was diagnosed with a form of juvenile arthritis (JA) when she was 14-months old. “Through medication we have been able control her symptoms. However when there is a flare up, Sara has pain, redness and swelling in her leg joints. However, with the advances in medicine we hope that she will lead an active, functional life,” said the Austrian mother.