May is Lupus Awareness Month in South Africa, and on 10 May, World Lupus Day, the Western Cape Department of Health and Wellness joins the global community in spotlighting this complex and often misunderstood autoimmune disease.
This year’s theme, ‘Belonging. Belief. Breakthroughs,’ not only celebrates the strength and resilience of those living with lupus but also emphasises the critical need for public understanding and scientific advancements in treating the disease.
Among those who exemplify this spirit is Dr Deepthi Raju Abraham, a passionate paediatric rheumatology and immunology specialist at Tygerberg Hospital and the Faculty of Medicine and Health Sciences at Stellenbosch University.
Diagnosed with lupus at the age of 27, Dr Abraham’s experience offers a unique perspective as both a medical professional and a patient battling the disease.
‘I was diagnosed with lupus at the age of 27, which presented itself as arthritis, skin rashes, and features of neuro lupus. As a paediatric rheumatologist/immunologist and a lupus warrior, I find myself uniquely positioned to understand the struggles and triumphs faced by my patients,’ she recalls.
Abraham’s journey has been one of resilience, deepened understanding, and purpose, nurturing a belief that every moment in life is a precious gift.
Living with systemic lupus erythematosus (SLE), commonly referred to as lupus, can often feel overwhelming. The disease manifests differently across individuals, impacting almost any part of the body and generally presenting a range of symptoms including fatigue, debilitating joint pain, skin rashes, and multi-organ involvement.
Patients often experience uninvited social isolation, and the loss of health can feel like a profound grief that must be navigated to allow for healing and acceptance.
Particularly concerning is the impact of lupus on women, especially those of childbearing age, who predominantly experience fatigue, joint pain, skin rashes, and serious organ complications. Furthermore, flare-ups can be triggered by stress, sunlight, or infections, with treatment typically involving a combination of immunosuppressants, corticosteroids, and necessary lifestyle adjustments.
In children and adolescents, lupus, or childhood-onset SLE, often presents with more severe complications. The incidence ranges between 2.0 and 7.6 per 100,000 children, with most cases onset occurring between ages 12 and 14.
Children with lupus are at a higher risk for serious issues like lupus nephritis and neuro-lupus, and because symptoms can overlap with other illnesses, timely diagnosis is essential to manage the disease effectively and mitigate complications.
A multidisciplinary team approach is critical for the successful treatment of lupus, involving a spectrum of specialists, including rheumatologists, nephrologists, dermatologists, and psychologists. Such collaborative care is vital in addressing the unique challenges faced by both children and their families.
Advice for lupus warriors, parents, and caregivers
- Educate yourself: Understanding lupus and its implications is crucial for advocacy and informed decision-making.
- Regular medical care: Ensure consistent check-ups with a paediatric rheumatologist for effective disease management.
- Medication management: Adhere closely to the prescribed treatment plan and stay vigilant about possible side effects.
- Promote a healthy lifestyle: Encourage a balanced diet, regular exercise, and ample sleep; doing these together fosters family compliance.
- Sun protection: As sun exposure can trigger lupus flares, ensure proper sunblock and protective clothing are used when outdoors.
- Emotional support: Facilitate an environment where feelings can be openly discussed, and consider support groups or counselling.
- Monitor symptoms: Keep a diary of symptoms and triggers to aid healthcare providers in managing treatment.
- Be prepared for flares: Establish a management plan for flare-ups, adjusting activities as needed.
- Connect with others: Join support groups or online communities to find shared experiences and resources.
As Abraham poignantly states, ‘Lupus is often called a ‘feel bad, look good’ disease. It’s difficult to explain and often misunderstood. Yet, within this struggle, a warrior realises that there lies an opportunity to harbour hope.’
In sharing her story of courage and vulnerability, Dr Abraham aims to illuminate the hidden battles many face, reminding us that while the journey may be fraught with challenges, it is also rich with moments of strength and grace.
Expressing gratitude for the support she receives from her family and colleagues, she concludes, ‘Through understanding and compassion, we can foster a community that both supports and uplifts one another in the face of adversity, transforming our collective grief into a shared journey of healing,’
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Picture: Supplied
