Terry Aretz appeared to be a high‑achiever: executive director of a nonprofit, a member of several boards, and a museum docent. Yet in January 2020, she began slowing down dramatically. “I felt utterly drained, with persistent muscle and joint pain,” she recalls. “Then I came home one day, lay on the couch, and couldn’t get up.”
A mother of two, Terry also endured weeks of severe sinus infections. Suspecting a link to her fatigue, she sought evaluation from an ENT specialist at a Montana hospital. After imaging and a thorough exam, the doctor noted calcification in all the salivary glands on the left side of her face. “He told me I was the perfect candidate for Sjögren’s syndrome,” she says, noting she had never heard of the condition before.
Sjögren’s is an autoimmune disease that currently has no cure. In Britain, around 500,000 people are believed to have it, with women aged 40–60 facing a much higher risk than men. In up to 40% of patients, the immune system damages healthy joint tissue, leading to inflammation and pain. The disease also targets moisture-producing glands, so symptoms can appear subtle—dry mouth, dry eyes, and dry skin. Beyond these, Sjögren’s can harm the kidneys, blood vessels, liver, pancreas, nerves, and lungs. About 5% of patients may develop lymphoma, a serious form of blood cancer.
Traditionally, treatments focus on managing symptoms rather than curing the disease. People often use lubricating eye drops, medicines to stimulate saliva and tears, and immune‑suppressing drugs such as hydroxychloroquine to ease joint pain and fatigue. For many, these approaches fall short or cause uncomfortable side effects like headaches and nausea.
Terry’s condition worsened within weeks of her diagnosis. “I was completely debilitated by the pain,” she says. “I went from full‑time activity from morning to night to lying curled in bed all day, with pain that felt as if it traveled from my fingertips to my toes.”
Today, her life has regained its rhythm. She’s back to spending time with family and friends, and she’s exercising again. The turning point was a groundbreaking monthly injection that researchers hope will soon be available on the NHS. The drug, ianalumab, works by blocking and then destroying immune cells that attack the glands responsible for tears and saliva. In trials, the medication rapidly and meaningfully reduced Sjögren’s symptoms.
The FDA has granted ianalumab breakthrough therapy status, a designation intended to accelerate the development of treatments for serious or life‑threatening conditions. Experts say it could reach NHS patients within a few years. “It could be revolutionary,” says Prof. Simon Bowman, a rheumatologist at University Hospitals Birmingham NHS Trust. If approved, ianalumab would be the first targeted treatment for Sjögren’s disease and could help prevent or even repair long‑term damage caused by the condition.
A striking fact: diagnosing an autoimmune disease typically takes about five years and involves seeing five different doctors on average. By addressing the root cause, Bowman suggests, the drug might reduce the risk of more serious complications.
For Terry, access to the treatment came via a clinical trial at a hospital six hours away. The journey was grueling, and there was no guarantee she would receive the drug. Yet within a few months, clinicians confirmed she was receiving the real treatment. She notes observable improvements—saliva production increased by about 60%, nails and hair grew back, eyes grew less dry, and after three months she could get out of bed. Decades of symptoms—dry eyes, perfume or makeup‑induced skin irritation, and Raynaud’s phenomenon—also began to fade.
After a year, when the trial ended, Terry was offered the chance to continue the drug for five more years ahead of broader rollout, and she accepted without hesitation.
Despite its promise, ianalumab does carry side effects. Terry experiences occasional mood dips. Bowman notes the drug won’t work identically for everyone, though other similar therapies are in development that may be effective for some patients.
Terry believes her story demonstrates the potential of these new treatments. “I can participate in life again. I’m excited for this drug to become available to everyone.”
