World Young Rheumatic Diseases Day: Spread the WORD! Spread Hope!
If rheumatic diseases in children are not treated appropriately, daily activities such as walking, climbing stairs and personal hygiene are affected. On World Young Rheumatic Diseases Day (WORD Day) commemorated today, Tygerberg Hospital is encouraging early referrals and diagnosis. WORD Day is annually organised by the international networks of the Paediatric Rheumatology European Society (PReS), and is aimed at spreading the fact that young people get rheumatological diseases too.
The goal of WORD Day is to encourage early diagnosis of the rheumatic diseases with immediate referrals to specialised paediatric rheumatologists in each country, including South Africa. The day will consist of diverse local events designed and implemented by local paediatric rheumatologists across the world.
Rheumatic conditions affect amongst others a child’s joints, muscles and bones, causing debilitating and deforming disease that leave children severely disabled if left untreated. The disease can have a significant impact on a child’s quality of life. Its long-term treatment sometimes leave children thin and short if not followed up regularly by a specialist trained in this area. Any child below the age of 16 years can present with arthritis associated with various rheumatic conditions. Annually Tygerberg Hospital treats around 200 to 300 patients in the Outpatients Department Clinic, which runs every Tuesday and Wednesday.
Chronic arthritis is the most common rheumatic condition presenting in childhood. According to global statistics, one in 1 000 children present with juvenile idiopathic arthritis (JIA), but due to poor awareness they are not diagnosed enough. There are different forms of arthritis in children. Oligo JIA is prevalent in younger girls and enthesitis-related JIA in boys older than six years. Poly JIA is more prevalent in teenagers – both girls and boys. The lupus condition is more prevalent amongst girls.
Most people are usually surprised to hear that children can present with severe arthritis like Cleo Otto (17), who was diagnosed with polyarthritis at the age of 2. “I wasn’t able to walk properly and that was when I was diagnosed with arthritis. Living with arthritis has been tough. I have my down days, but I’ve become so used to it all. It doesn't really bother me anymore because it doesn't define who I am as a person. I feel like it has made me such a strong person.”
Ronell Abrahams (17) was diagnosed with juvenile idiopathic arthritis in 2012. She was only 10-years-old at the time. “I did not know what arthritis was, but as I grew up, I started to realise what it meant – sometimes it's hard to do stuff that you could once do, and sometimes I can’t even go to school because I’m in pain. On some nights I can’t even sleep because I’m in pain,” said Ronell.
Alarming rheumatic signs to watch out for:
- Swollen, painful and stiff joints in the morning;
- Loss of weight;
- Inability to do routine daily activities;
- Difficulty mobilising, performing poorly or being unable to even attend school.
Dr Deepthi Abraham, paediatric rheumatologist at Tygerberg Hospital, concluded: “We are reminded daily that hope exists for these children as long as they are referred to us early. Creating and sharing awareness is therefore key.”
The development of new medications and improving multidisciplinary collaborations amongst specialists and allied health science partners has remarkably changed the outcome for these children. Foundations such as Andreas Gift have been a tremendous source of support and care to patients suffering with lupus.