Lupus, a chronic and unpredictable autoimmune disease, can have a profound impact on every aspect of a person’s life. Dr Deepthi Raju Abraham knows this all too well. Diagnosed with lupus at the age of 27, Abraham brings a dual perspective to her work – one of both caregiver and patient.
Often invisible and misunderstood, this condition affects multiple organs and systems, producing a wide range of symptoms that vary from person to person.
During May, Lupus Awareness Month in South Africa, health advocates are shining a spotlight on those living with this disease. This year’s theme, “Belonging. Belief. Breakthroughs.”, honours the strength and resilience of lupus warriors and emphasises the need for scientific advancement and greater public understanding.
Among those leading the way in both personal strength and professional insight is Dr Abraham, a paediatric rheumatology and immunology specialist at Tygerberg Hospital and Stellenbosch University’s faculty of medicine and health sciences.
“I was diagnosed with lupus at the age of 27, which presented itself as arthritis, skin rashes and features of neuro-lupus,” she shares.
“As a paediatric rheumatologist/immunologist and a lupus warrior, I find myself uniquely positioned to understand the struggles and triumphs faced by my patients.”
Now a mother and wife, Abraham has found meaning in her journey with lupus, drawing strength from her dual roles. “Being a protagonist by nature and a positive, effective optimist in action, I truly believe I’m fortunate to have two perspectives; I share it as a medical professional and as someone who battles this autoimmune disease daily.
“Living with lupus has helped give me a heightened sense of purpose and acknowledge wholeheartedly that every moment in life is both a miracle and an act of faith,” she says.
The challenge of understanding lupus
According to the Western Cape department of health and wellness, systemic lupus erythematosus (SLE), commonly known as lupus, is notoriously difficult to diagnose and manage. It can cause joint pain, skin rashes, fatigue, and complications in vital organs, including the kidneys and brain. Symptoms often come and go in unpredictable flare-ups, triggered by stress, sunlight, or infections.
The emotional toll is often underestimated. “The death of one’s health is a grief to be overcome, too. Few realise this,” Abraham reflects. “The grieving process is one to surrender to in order to pave the way for true healing and acceptance to seep in.”
For women of childbearing age, who make up the majority of those affected, lupus is not just a medical diagnosis but an ongoing battle to maintain quality of life and emotional well-being. Treatment typically includes immunosuppressants, corticosteroids, and lifestyle modifications to manage the disease and prevent complications.
When lupus affects children
While lupus is already a serious condition in adults, childhood-onset SLE (cSLE) tends to be even more severe, explains the department. The onset usually occurs between the ages of 12 and 14, and the condition affects between 2.0 and 7.6 per 100 000 children. These young patients are more likely to suffer serious complications such as lupus nephritis and neuro-lupus.
Diagnosis in children can be delayed, as lupus symptoms often mimic those of other illnesses. Early referral to a specialist is essential. A multidisciplinary team – typically including rheumatologists, nephrologists, dermatologists, psychologists, and more – is crucial to managing paediatric lupus effectively.
Abraham underscores the importance of a holistic, informed approach for caregivers and families.
“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 and nurture growth and resilience!”
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Empowering families, supporting children
For parents and caregivers of children with lupus, education and support are critical. Abraham offers practical advice:
- Stay informed: Learning about the disease and its treatments helps families advocate for their child.
- Regular monitoring: Routine check-ups with a paediatric rheumatologist are essential to managing flares and adjusting treatment.
- Medication management: Adhering to the prescribed treatment plan is crucial.
- Healthy habits: Encourage balanced nutrition, sleep, and regular activity as a family to promote well-being.
- Sun protection: Sunscreen should be reapplied every four hours, and children should wear protective clothing when outdoors.
- Emotional care: Emotional support, counselling, and support groups can make a significant difference for children and their families.
- Symptom tracking: Keeping a journal of symptoms and triggers can help doctors tailor care.
- Foster open dialogue: Children need to feel heard and supported in managing their condition.
Connecting with others, such as through local groups like Andrea’s Arthritis Foundation South Africa or the Arthritis Association South Africa, can offer community and resources.
A journey of strength and grace
Abraham’s story is one of courage, vulnerability, and unwavering purpose. “In sharing my story of courage and vulnerability, I hope to shine a light on the often-hidden battles that many face. It is a reminder that while the journey may be fraught with challenges, it is also paved with moments of profound strength and unexpected grace.”
With the support of her family and workplace, she continues to advocate for patients, both as a doctor and as someone who truly understands what it means to live with lupus.
“Through understanding and compassion, we can foster a community and village that both supports and raises one another in the face of adversity, transforming our collective grief into a shared journey of healing.”
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