For nearly 50 years, Emma Elms dismissed the angry red hives that appeared on her face in the sun as rosacea. What she eventually learned was that she had cutaneous lupus, an autoimmune disease that primarily affects the skin.

Elms's journey to a diagnosis was protracted, spanning decades and multiple doctor visits. The turning point came in August 2023 when a routine blood test revealed high levels of inflammation, prompting an urgent referral to a rheumatologist. During a holiday in Milan amidst 40C heat, her face erupted in red lumps accompanied by a severe migraine, intensifying her concerns.

Lupus, known as the “disease of a thousand faces,” is characterized by a wide range of symptoms that can overlap with other conditions, often leading to delayed diagnoses. Elms recalls a childhood incident in Australia where she developed severe red hives that persisted for the entire five-week trip. Later, as a teenager, she struggled with raised, itchy lumps on her cheeks, nose, hairline, and upper back whenever exposed to the sun. A dermatologist misdiagnosed her with rosacea, a conclusion she believed for approximately 30 years.

Cutaneous lupus is a form of lupus that mainly affects the skin, often triggered by sunlight. This can lead to a distinctive red rash, which signals a lupus flare-up. While Elms was relieved not to have the more severe systemic lupus, which can impact the heart, lungs, brain, and kidneys, she acknowledges a 20% chance of developing it, with increased sun exposure raising this risk.

Today, Elms manages her condition with two topical steroid creams that treat flare-ups but do not prevent them. Her consultant's primary advice is lifelong avoidance of direct sun exposure. This has necessitated changes in her lifestyle, including carrying a sun parasol even for short outings and wearing high-factor sunscreen year-round. While she can no longer work on a tan, she continues to travel by planning trips during cooler seasons and wearing protective clothing.

Lupus is an incurable, lifelong condition. While there is no cure, various drug treatments are available to manage the symptoms of systemic lupus. Approximately 50,000 people in the UK have lupus, with about 90% of them being women typically aged between 15 and 55. The condition can sometimes develop during menopause due to hormonal changes, although in Elms's case, it first presented in childhood.