Hidden disease: People are continuing to suffer and possibly die due to complications associated with raynaud's syndrome because doctors don't know enough about it, according to Senator Mary Henry.
Dr Henry, patron of the Irish Raynaud's and Scleroderma Society, was speaking in advance of the society's annual conference this weekend. The society is sending information leaflets to every GP in the State in an effort to increase awareness of these conditions.
"Raynaud's and scleroderma are difficult and complex conditions which need a lot more attention than they are getting," said Dr Henry.
Characterised initially by an acute intolerance of the cold, raynaud's syndrome and scleroderma are circulatory and connective tissue diseases. Both are more commonly seen in women, with raynaud's affecting about 10 per cent of the population and scleroderma about 2 per cent.
The raynaud's patient will suffer from pain in their extremities - fingers, toes, elbows - when cold, due to poor circulation. The digits may become white, numb and lifeless. In severe cases, where the circulation is significantly disrupted, there can be ulcers that will not heal and, in worse cases, gangrene, leading to amputation.
It can also attack internal organs. In secondary raynaud's, connective tissue disease develops. The most deadly form is scleroderma. This is a chronic disease of the immune system, connective tissue and blood vessels.
According to the information leaflet, which the society is sending to GPs, there is no fixed pattern to the symptoms of scleroderma. They are caused by "the connective tissue thickening both externally and internally, and becoming fibrotic and inflexible.
"How disabling the disease depends on where and how fast this is taking place. Generally, systemic scleroderma escalates by progressing to the major organs, hardening and shrinking the connective tissue to reduce organ function until the organ fails."
Early symptoms following onset of raynaud's include tight shiny skin on hands and feet, dryness of the eyes and mouth, difficulty swallowing, fatigue, reflux and throat ulceration and constipation.
"The trouble is people first don't get properly diagnosed and secondly don't know there are things that can be done about it," said Ann Kennedy, chief executive of the society. The medical professionals are often as unaware as the sufferers, she added.
"It is a hidden disease. The awareness of raynaud's is improving but not of scleroderma. I have had people contact me who have had the symptoms, such as cold digits, acid reflux, dry eyes and mouth, and their GP has not picked up that they have symptoms of scleroderma."
She said it was important that these conditions were caught early so sufferers could be put on the correct medication and helped with simple measures to keep themselves as well as possible.
The Irish Raynaud's and Scleroderma Society annual conference takes place this Saturday at the Stillorgan Park Hotel. For information and a copy of the GP information leaflet, contact (01) 202 0184.
