For decades, Emma Elms experienced recurrent, angry red hives on her face, particularly when exposed to the sun. She, and medical professionals, long dismissed the condition as rosacea, a common skin disorder. However, after numerous doctor visits, blood tests, and dermatology appointments, Elms received a diagnosis: cutaneous lupus, a form of lupus that primarily affects the skin.
Lupus is an incurable, lifelong autoimmune disease where the immune system attacks the body's own tissues. The rash associated with lupus, often triggered by sunlight, is a sign of a flare-up, indicating a reaction to sun exposure. Elms's symptoms first appeared during a childhood trip to Australia when she was four, presenting as red hives that persisted throughout the five-week journey. Her mother applied high-factor sunscreen, and upon returning to the UK, she was prescribed a steroid cream for her face.
As a teenager, Elms continued to struggle with raised, itchy lumps on her cheeks and sometimes her nose, hairline, and upper back when in the sun. These blemishes would take approximately six weeks to disappear. A dermatologist later misdiagnosed her with rosacea, a diagnosis Elms accepted for the next 30 years. She expressed regret for not seeking further medical attention sooner, acknowledging the impact this had on her enjoyment of sunny seasons.
In August 2023, while on holiday in Paris, Elms experienced a severe reaction to the heat, developing red lumps on her face and a three-day migraine. This prompted her doctor to order routine blood tests, which revealed high levels of inflammation in her body and led to an urgent rheumatology referral. Online research into inflammation and symptoms suggested lupus.
In September 2024, over a year after the initial referral, Elms was diagnosed with cutaneous lupus. She noted her relief at not having the more severe form, systemic lupus, which can cause joint pain, exhaustion, and damage to vital organs such as the heart, lungs, kidneys, and brain. Lupus is sometimes called the ‘disease of a thousand faces’ due to its wide-ranging and overlapping symptoms, which contribute to diagnostic delays.
Lupus affects an estimated 50,000 people in the UK, with approximately 90 percent being women typically between the ages of 15 and 55. The condition can emerge during menopause due to hormonal changes, though Elms's symptoms began in childhood. She currently manages her condition with two topical steroid creams that treat flare-ups but do not prevent them. Her consultant advised that lifelong avoidance of the sun is the best preventative measure.
Elms now uses factor 50 sunscreen year-round and a specialized factor 100 lotion during periods of high UV. She has also adapted her lifestyle, wearing a sun parasol for short outings and opting for evening swims. While there is no cure for lupus, treatments are available to manage symptoms of systemic lupus, a condition Elms has a 20 percent chance of developing. She remains committed to traveling, planning trips during cooler months and embracing a new perspective on holidays that prioritizes sun avoidance over tanning.