Childhood autoimmune diseases and their impact in Malaysia
Resource person: Dr Lim Sern Chin, Consultant Paediatrician and Paediatric Rheumatologist at ParkCity Medical Centre
Children face lifelong conditions
When most people think about arthritis or lupus, they picture adults. But for a small number of Malaysian children, these conditions are a part of daily life. Diagnosed with autoimmune diseases such as Juvenile Idiopathic Arthritis (JIA) or Systemic Lupus Erythematosus (SLE), these young patients face silent but life-altering challenges.
In Malaysia, JIA affects an estimated 3 to 5 out of every 100,000 children, while SLE is more common in Southeast Asia than in Western countries. Alarmingly, up to 20% of childhood autoimmune cases in Malaysia involve severe complications at diagnosis, often due to delayed detection.
Though rare, autoimmune diseases in children can range from mild and short-lived to chronic and systemic. Early recognition is key to avoiding complications and improving outcomes.
Recognising the early signs
Autoimmune diseases occur when the immune system mistakenly attacks the body’s own tissues. In children, these can take many forms—including Henoch-
Schonlein Purpura (a rare inflammation of blood vessels), Kawasaki disease (affecting the heart), Type 1 Diabetes Mellitus, autoimmune thyroiditis, and systemic illnesses like JIA and SLE.
Parents should watch for warning signs like swollen joints, unexplained rashes, chronic fatigue, or frequent fevers. “If something seems off and doesn’t go away, don’t wait. Bring your child to see a doctor.”
Explaining a new diagnosis to a child can be difficult. Use simple, age-appropriate language and encourage open communication. Let them ask questions and express their fears without judgment.
Parents also need to challenge myths. Arthritis is not just an old person’s disease, and autoimmune conditions are neither contagious nor caused by lifestyle choices. With today’s treatments, many children can lead active, fulfilling lives.
Creating a supportive home routine
Managing symptoms such as pain or fatigue requires more than just medication—it also takes a nurturing home environment. Dr Lim emphasises that sticking to prescribed treatments is essential, as symptoms tend to worsen without proper care.
Gentle physical activity, such as swimming or stretching, can improve strength, flexibility, and mood. A consistent sleep schedule and limited screen time before bed also contribute to better overall well-being.
While no specific diet has been proven to cure autoimmune diseases, a balanced diet with minimal processed food is always advisable. For photosensitive conditions like SLE, sun protection is crucial—think hats, sunscreen, and long sleeves.
Parental mindset plays a powerful role. Doubting treatment or expressing fear around medication can influence a child’s attitude. Instead, stay aligned with the care plan and model confidence in the process.
Advocating for your child
School can pose additional hurdles. Fatigue, pain, or frequent medical appointments may lead to missed classes or learning gaps.
Parents should work closely with teachers to develop practical accommodations—ergonomic seating, extended time for tests, or flexible PE participation. Advocate for solutions like relocating classrooms to more accessible floors or allowing in-school medication administration.
Help your child stay socially connected, too. Encourage participation in activities when they’re able. If physical meetups aren’t possible, suggest video calls or small group playdates to maintain friendships.
Support groups can also be a lifeline. They offer understanding, shared strategies, and a sense of connection for both children and their families.
Staying active without overdoing It
Physical activity remains important, even after diagnosis. Activities like swimming, walking, cycling, and yoga help preserve mobility and build strength. Physiotherapy tailored to joint health can also be helpful.
At the same time, rest is essential. Parents should learn to recognise signs of fatigue or pain and encourage children to listen to their bodies. Teach them it’s okay to speak up and take breaks when needed.
Caring for emotional health
Living with a chronic illness can affect a child’s mental health. They may experience anxiety, sadness, or withdrawal. Be alert to changes in mood, sleep, eating habits, or self-esteem.
Create a safe space for them to share how they feel. Celebrate small victories—whether it’s a good day, taking medicine without complaint, or completing a school task. Simple praise, small rewards, or special outings can boost morale and motivation.
Including the whole family
Siblings and extended family play a key role in support. Honest, respectful conversations help everyone understand the condition and avoid unintentional hurtful comments.
Encourage siblings to voice their feelings, and involve them in caregiving when appropriate. This fosters inclusion and reduces feelings of resentment or neglect.
Parenting through the unexpected
It’s natural for parents to feel overwhelmed—or even guilty. But these conditions are complex and not caused by anything you did or didn’t do.
Acknowledge your feelings and don’t hesitate to seek help. Focus on what you can do. “Take it one day at a time. Celebrate the small wins. And most importantly, treasure the time you have with your child.”
In a world that expects children to be carefree, those with autoimmune diseases show a different kind of strength. With early care, consistent treatment, and emotional support, they can live full, joyful lives—growing up strong, brave, and thriving.
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