Women must educate themselves on warning signs of scleroderma
Irish women need to educate themselves about the early warning signs of scleroderma because early diagnosis can save lives. Scleroderma is a chronic, incurable disease of the immune system, blood vessels and connective tissue. It can attack many body systems or just a few.
Tuesday, 29th June 2010 is World Scleroderma Awareness Day and to coincide with this the Irish Raynaud’s and Scleroderma Society (IRSS) is calling on women to educate themselves about the warning signs of Scleroderma.
The IRSS have launched a handy pocket-sized information card, ‘SO RARE’, which details three of the early symptoms of scleroderma.
Speaking at the launch, Chief Executive of the Irish Raynaud’s and Scleroderma Society Ann Tyrrell Kennedy commented that “because scleroderma is rare and its most serious symptoms can be hidden, it is a disease that often goes undiagnosed. Today we are launching the SO RARE slogan, which spells out three early warning signs that many people do not realise are symptoms of scleroderma."
She went on to say: “The three symptoms of sore swollen fingers, Raynaud’s syndrome, and reflux/heartburn are clues to developing scleroderma. Identifying these symptoms is essential as early diagnosis can save lives.”
Research conducted by the Society found that the average time between diagnosis of Raynaud’s and scleroderma is 6.7 years. In most cases, these diagnoses were made by rheumatologists, of whom there is an extreme shortage of in Ireland, making it even more difficult to get diagnosed.
Over 350,000 people in the Republic suffer from Raynaud's disease, one of the symptoms of scleroderma. In two per cent of cases, individuals with Raynaud’s develop scleroderma. Of the people who develop scleroderma, 98 per cent of them are women.
“The day-to-day lives of these women have been severely affected because of Scleroderma and many have suffered for years before a correct diagnosis was made.
"Today we are also pleased to announce the appointment of the first National Scleroderma Nurse, who will be based in the Dublin Academic Medical Centre, a consortium of St Vincent’s and the Mater hospitals with UCD.
The specialist nurse will act as an interface between the patient and the doctor, facilitating appointments, conducting diagnostic tests, explaining symptoms, treatments, tests and side-effects, and answering the questions of patients and their families.
We estimate that having a Scleroderma Nurse will more than triple the capacity for patients to be diagnosed and treated early,” commented Ms Kennedy.
For further information or to get a ‘So Rare’ card, log on to www.irishraynauds.com or call (01) 202 0184.