Lupus is a tough illness that causes pain, tiredness, and skin problems, and in South Africa, people manage it with medicine, sun protection, and regular doctor visits. Every May, communities come together to raise awareness, share stories, and support those living with lupus, especially on World Lupus Day. Dr. Deepthi Abraham, who both treats patients and lives with lupus herself, shows how courage and understanding help people keep going despite hard days. Living with lupus means facing surprises and challenges, but with strong community support and care, many find hope and strength to carry on.
What is lupus and how is it managed in South Africa?
Lupus is a chronic autoimmune disease causing symptoms like joint pain, fatigue, and rashes. In South Africa, management includes immunosuppressant medications, lifestyle adjustments (like sun protection), regular medical care, symptom tracking, and strong community support to improve quality of life and resilience.
The Month of Awareness: Community, Solidarity, and Advocacy
Each year, as May begins in South Africa, a sense of anticipation fills the air. The month serves as Lupus Awareness Month, a time when communities, families, and advocates come together to shine a spotlight on systemic lupus erythematosus (SLE). On the tenth of May, the Western Cape unites with the world to mark World Lupus Day. This international event stands as a symbol of unity, supporting the millions who face the daily realities of lupus. The 2024 theme, ‘Belonging. Belief. Breakthroughs,’ strikes a powerful chord—emphasizing not only scientific progress but also the profound importance of empathy and shared experience.
Government bodies such as the Western Cape Department of Health and Wellness partner with medical professionals, patient advocates, and researchers to elevate public awareness and promote ongoing education. Their efforts weave knowledge, hope, and determined activism into a powerful network, supporting those affected by lupus and their families. This collaborative approach recognizes that progress depends equally on medical advances and the social fabric that sustains individuals living with chronic illness.
Public events, information campaigns, and outreach activities during Lupus Awareness Month serve to educate the wider public and foster understanding. By highlighting the stories of those affected, these initiatives break down stigma, replace misconceptions with facts, and encourage a culture of compassion. In doing so, they lay the groundwork for a more supportive society—one where no one faces lupus alone.
The Personal and Professional Battle: Dr Deepthi Raju Abraham’s Dual Perspective
Among the many voices shaping lupus advocacy, Dr Deepthi Raju Abraham’s stands out for its unique blend of professional expertise and lived experience. As a specialist in paediatric rheumatology and immunology at Tygerberg Hospital and Stellenbosch University, she works daily with young patients fighting autoimmune disease. Yet her connection to lupus runs even deeper—she has managed her own diagnosis since the age of 27, navigating a complex landscape of symptoms and uncertainty.
Dr Abraham’s journey with lupus began abruptly. She recalls the sudden onslaught of joint pain, persistent rashes, and neurological challenges that forced her to adapt both personally and professionally. Despite the disruption, she cultivated a rare sense of understanding and empathy, finding that her own struggles mirrored those of her patients. “As both a paediatric rheumatologist/immunologist and a lupus warrior, I am able to truly comprehend what my patients endure,” she shares, her perspective a testament to this year’s call for belonging and belief.
Her story highlights the unpredictable and deeply personal nature of lupus. Symptoms often come without warning—fatigue, aching joints, unexplained rashes, even organ involvement. These manifestations bewilder patients and clinicians alike, as lupus rarely follows a simple or predictable course. For Dr Abraham, and for many others, resilience grows not from the absence of hardship but from the daily choice to keep moving forward despite it.
The Many Faces of Lupus: Symptoms, Triggers, and Life’s Challenges
Living with lupus means accepting a disease that rarely fits into neat categories. Its symptoms shift and evolve, ranging from relentless exhaustion to sudden joint pain and skin eruptions. For some, the disease invades deeper, targeting the heart, kidneys, or brain, introducing risks that require ongoing vigilance. Patients and their families live with the knowledge that symptoms may subside only to return with new force, making unpredictability a constant companion.
Social understanding of lupus often lags behind medical knowledge. Many who live with the condition encounter skepticism or misunderstanding, as the invisible nature of many symptoms can mask the seriousness of the illness. This isolation can deepen the sense of loss, as routines and abilities once taken for granted are disrupted. Many describe their emotional journey as one of mourning—moving through denial, anger, bargaining, and depression before finding a measure of acceptance. Yet, in lupus, acceptance isn’t about giving in; it’s an act of courage, a conscious embrace of resilience and hope.
Women, particularly those of childbearing age, bear the greatest burden of lupus. Their lives become a careful balancing act, managing fatigue, pain, and sudden flares that disrupt work, family, and social activities. Triggers such as stress, sunlight, and minor infections can provoke new waves of illness, making careful planning and self-care essential. Treatment usually involves immunosuppressant medications, corticosteroids, and strict lifestyle adaptations. Yet, these measures bring their own challenges—side effects, continuous medical oversight, and the emotional strain of living between hope and caution.
Childhood-Onset Lupus: Unique Hurdles and the Importance of Early Intervention
Lupus does not spare young people. Childhood-onset SLE, while less common (with incidence rates between 2.0 and 7.6 per 100,000), often presents with greater severity than adult cases. Most young patients receive their diagnosis in early adolescence, just as they begin to assert independence and shape their identities. For these children and teens, lupus can strike the kidneys (resulting in lupus nephritis) or affect the nervous system (neuro-lupus), leading to complications that demand immediate and sustained attention.
Identifying lupus in children poses special challenges. Symptoms often resemble those of other illnesses, making early diagnosis difficult. Time becomes a critical factor; catching the disease soon can prevent irreversible damage, while delays can have lifelong consequences. Parents must quickly become experts in advocacy, navigating complex healthcare systems and managing a demanding regimen of doctor visits, medications, and emotional support.
Collaboration underpins the effective treatment of paediatric lupus. Medical teams bring together rheumatologists, nephrologists, dermatologists, psychologists, and more, each contributing unique expertise. This multidisciplinary approach reflects a broader trend in medicine—recognizing that optimal care emerges from shared knowledge and collective problem-solving. Just as artists have historically formed communities to innovate and support one another, so too do medical professionals join forces to provide comprehensive care.
Management, Support, and the Power of Community
Knowledge empowers those facing lupus. Learning about the disease transforms fear and confusion into proactive management. For families, sticking to regular specialist appointments, especially with paediatric rheumatologists, is crucial. Meticulous attention to medication schedules, symptom monitoring, and lifestyle adjustments creates a foundation for stability, even as the disease’s course remains unpredictable.
Lifestyle choices play a pivotal role in managing lupus. The South African sun, both a source of life and a potential threat, requires vigilance. Sunlight can trigger flares, so sun protection—clothing, hats, and sunscreen—becomes a daily habit. These small routines symbolize larger strategies of self-care, allowing individuals to reclaim a sense of agency over their health.
Support networks offer vital emotional sustenance. Spaces where feelings can be openly discussed, whether in person or through online communities, help alleviate isolation. Support groups become lifelines, connecting individuals who share similar struggles and triumphs. Within these circles, practical advice and heartfelt stories foster a sense of belonging that transcends geographic and cultural divides.
Maintaining a symptom diary can offer clarity, revealing patterns and helping patients and clinicians fine-tune treatment. Tracking the interplay of stress, environment, and symptoms not only supports better medical care but also promotes personal reflection and growth. Having a plan to address flares—whether that means adjusting daily activities, seeking medical advice, or simply taking time to rest—can transform anxiety into manageable action.
Art, Gratitude, and Hope: Finding Strength in Shared Experience
Dr Abraham often refers to lupus as a “feel bad, look good” disease, highlighting the disconnect between outward appearance and inward struggle. Many outsiders underestimate the severity of the condition because its signs may not be immediately visible. Yet, within this paradox, many discover unexpected reservoirs of hope and determination. Artists like Frida Kahlo have long used their work to explore the hidden dimensions of illness, expressing pain, endurance, and transformation through creative expression.
Gratitude emerges as a powerful theme for many living with lupus. Dr Abraham credits her family and colleagues for their unwavering support, recognizing that such networks do more than comfort—they catalyze healing and growth. This communal approach reflects a broader cultural shift that values compassion, mutual aid, and recognition of challenges that may not be outwardly visible.
World Lupus Day is not just an annual marker; it is a living reminder of the ongoing journey—scientific, social, and personal—toward understanding and overcoming lupus. Advances in research and treatment are vital, but the most profound breakthroughs often occur quietly: in moments of connection, in a flare that is managed, in laughter on a hard day. The Western Cape’s commitment to lupus awareness highlights not only the evolving science of medicine but also the enduring art of living with uncertainty, courage, and hope. Through unity, education, and compassionate care, South Africans are building a future where those affected by lupus can thrive.
What is lupus and how is it managed in South Africa?
Lupus is a chronic autoimmune disease where the immune system attacks the body’s own tissues, causing symptoms such as joint pain, fatigue, and skin rashes. In South Africa, lupus management involves a combination of immunosuppressant medications, lifestyle changes (notably sun protection due to the country’s strong sunlight), regular doctor visits, and symptom monitoring. Patients often rely on a multidisciplinary healthcare team and supportive community networks to improve quality of life and resilience against the disease’s unpredictable nature.
Why is May important for lupus awareness in South Africa?
May is designated as Lupus Awareness Month in South Africa, culminating on May 10th with World Lupus Day. During this month, communities, healthcare providers, patient advocates, and government bodies like the Western Cape Department of Health come together to raise public awareness, dispel myths, and promote education about lupus. Events and campaigns emphasize themes of unity, empathy, and scientific progress, helping to build a supportive environment for those living with lupus and their families.
Who is Dr Deepthi Raju Abraham and why is her story significant?
Dr Deepthi Raju Abraham is a specialist paediatric rheumatologist and immunologist based at Tygerberg Hospital and Stellenbosch University. She has a unique perspective because she both treats patients with lupus and lives with the disease herself. Diagnosed at 27, Dr Abraham’s personal experience enriches her medical practice by deepening her empathy and understanding of the unpredictable challenges lupus patients face, making her an influential advocate for patient-centered care and resilience.
What challenges do children with lupus face in South Africa?
Childhood-onset lupus, though less common, can be more severe than adult lupus. It often manifests during early adolescence, affecting critical organs like kidneys (lupus nephritis) and the nervous system (neuro-lupus). Early diagnosis is difficult because symptoms mimic other illnesses, and delays can lead to serious complications. Children with lupus require coordinated care from multidisciplinary medical teams including rheumatologists, nephrologists, dermatologists, and psychologists to manage the disease effectively and support their emotional wellbeing.
How does sun exposure affect people living with lupus in South Africa?
Sunlight exposure is a major trigger for lupus flares because ultraviolet (UV) rays can provoke immune system reactions leading to increased symptoms such as skin rashes and joint inflammation. Given South Africa’s strong sun, people living with lupus must adopt rigorous sun protection measures including wearing protective clothing, hats, and applying broad-spectrum sunscreen daily. These precautions are essential to reduce flare-ups and maintain disease stability.
What role does community support play in managing lupus?
Community support is vital for those living with lupus, helping combat feelings of isolation caused by the disease’s invisible symptoms. Support networks—whether in-person groups or online communities—provide emotional comfort, practical advice, and shared experiences that foster belonging and hope. Through storytelling, advocacy, and education during events like Lupus Awareness Month, the lupus community in South Africa strengthens resilience and encourages proactive management of this challenging condition.
