A North East researcher is developing an “urgently needed” treatment for patients with a severe but little-known auto-immune condition which makes it difficult for sufferers to cry and swallow.
Specialist occupational therapist Kate Hackett from Newcastle University has been awarded a four-year training fellowship of £176,000 from leading medical research charity Arthritis Research UK to develop an evidence-based package of treatment for Sjogren’s syndrome.
The rare condition which mainly affects the glands that produce saliva and tears – causing a dry mouth and eyes – also leads to extreme fatigue, and other internal organ problems. It is estimated that half a million people in the UK have the condition, which most commonly affects women aged 40-60. A high-profile sufferer is tennis player Venus Williams.
Ms Hackett said: “As well as the classic symptoms of dry eyes and mouth, fatigue and muscle and joint pain, people with the condition have great difficult in carrying out everyday activities such as eating and shopping.
“The degree of disability is similar to those affected by chronic fatigue syndrome. However, patients often receive little help with managing their daily activities, which is in stark contrast to those with chronic fatigue.
“Current drug treatments may help with some of their physical symptoms, but do little to improve their ability to manage their everyday lives. Therefore, there is an urgent need to develop an effective treatment to improve their quality of life.”
As part of her study, Ms Hackett will investigate current treatments and collect views of patients, carers and healthcare workers about what would improve quality of life. By the end of the fellowship she will have developed a treatment package which will aim to enable patients to effectively manage their daily activities, as well as a manual to train health professionals in how to deliver it.
Meanwhile, experts at Newcastle’s Royal Victoria Infirmary were recently announced as taking part in a groundbreaking £1m clinical trial into the illness. The trial is comparing the effectiveness of a drug called rituximab against a placebo in reducing dryness and fatigue.
One woman who knows first-hand the importance of improving treatment is Michelle Harrison, of Newton Aycliffe, County Durham. The 41-year-old, who is married to John, has had Sjogren’s syndrome since the age of 17. She has been on a cocktail of drugs which, over the years, has kept her symptoms in check.
Three years ago, the IT systems manager had a serious flare in her condition and was also diagnosed with the related auto-immune joint condition lupus.
She said: “No one has ever heard of Sjogren’s or lupus and always say that I look so well. Fatigue is the worst thing.
“At least with the dry eyes you can use eye drops and do something to alleviate it; with a dry mouth you can chew something; and for pain there are painkillers, but the fatigue is bone-crushing.
“You get no refreshment from sleep and you physically start shaking with tiredness. We need a better awareness of Sjogren’s syndrome and a better deal for patients.”