A Budleigh Salterton woman who suffers from a medical condition called Sjögren’s Syndrome (SS) has written for the Journal about her experience of the illness to mark World Sjögren’s Day on July 23.

SS is an autoimmune disease where the body attacks various secretory glands. It is a relatively unrecognised and underfunded illness, but research is now being undertaken to try and help patients who suffer from this debilitating disease. There are approximately 660,000 people in the UK (one per cent of the population) who suffer from SS, and it is estimated that 600,000 of those sufferers are women. The number of patients could be significantly higher as SS manifests itself in various guises and is very difficult to detect. Patients often wait years, even decades, for a diagnosis.

SS, if known at all, is often shrugged off as “oh, the dry eye and dry mouth Syndrome”. Yet dry mouth and dry eyes can cause tremendous problems for the patient. A dry mouth can result in waking several times in the night to a tongue that is stuck to the roof of the mouth, or a burning sensation caused when the mouth is so dry, even though the patient has used a gel to stimulate salvia glands on going to sleep. There is always a glass or bottle of water at the patient’s bed side. Dry mouth can cause dental problems and tooth decay, and patients can struggle with eating, swallowing, and talking.

Dry eyes will also disturb the sufferer’s sleep. Eye gel to lubricate the eyes doesn’t always solve the problem. During the day patients will have to use eyedrops on several occasions to stop the painful itching and dryness. Many people suffer from permanent damage to the surface of their eyes.

But Sjögren’s, regrettably, can be more than just dry eyes and mouth. Not all SS sufferers will have added complications, but many patients, to a lesser or greater degree, can develop other symptoms. Glandular secretions are essential in lubricating other parts of the body. For example, lack of secretions can cause problems with the hearing mechanism, and a can cause a higher risk of chest infections which can lead to interstitial lung disease. Other underlying conditions that affect some SS patients is Raynaud’s, (where the extremities of the body (hands and toes) are constantly and uncomfortably cold) and Purpura, where the capillary blood vessels leak (more commonly seen on the legs). Not all SS patients enjoy the sun seeking the shade whenever possible. A dry skin can result in sunburn and/or an itchy, uncomfortable, and unsightly heat rash.

In severe cases SS sufferers can develop inflammatory arthritis (and osteoarthritis) resulting in exceedingly painful joints in various parts of the body.

It is no wonder that SS patients complain of chronic fatigue where they feel like they are ‘walking through treacle’ hardly being able to put one foot in front of the other. For World Sjögren’s Day, Sjögren’s Europe (SE) the organisation co-ordinating research in Europe, is highlighting this aspect of the disease. They wish to “contribute to increased awareness and acknowledgement of fatigue as a major factor in Sjögren’s”. SE is only too aware that fatigue is one of the most prevalent and disabling patient reported symptom of SS. Fatigue in Sjögren’s clearly differs from ordinary tiredness, and SE describe it as “an ever present, fluctuating, and non-relievable lack of vitality being beyond one’s own control”. They go on to say that “not everyone experiences it in the same way, but fatigue is undeniably a permanent part of patients’ lives. It is a debilitating symptom which is associated with reduced health related quality of life”.

When you read or hear that it is World Sjögren’s Day, please give a thought to those that suffer from this highly stressful and painful disease.

If you have any concerns that you may have similar symptoms, or you would like to donate to the British Sjögren’s Syndrome Association email: office@bssa.uk.net. Or telephone the helpline: 0121 478 1133. An Exeter support group meets regularly and can be contacted via BSSA.