Scleroderma often left undiagnosed

[Posted: Sun 04/07/2010 by Deborah Condon www.irishhealth.com]

Irish women need to educate themselves about the early warning signs of scleroderma, as an early diagnosis can save lives, the Irish Raynaud's and Scleroderma Society (IRSS) has said.

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. The three symptoms of the condition are sore swollen fingers, Raynaud's syndrome and reflux/heartburn.

Raynaud's is a condition in which the flow of blood circulating to the fingers and toes is constricted in response to even moderate cold or stress, causing pain and numbness and preventing ordinary activities. Over 350,000 people in Ireland suffer from Raynaud's disease, one of the symptoms of scleroderma. In 2% of cases, individuals with Raynaud's develop scleroderma. Of the people who develop it, 98% are women.

To help women identify the condition, the IRSS has launched a pocket-sized information card, which provides details about the three symptoms to watch for.

"Because scleroderma is rare and its most serious symptoms can be hidden, it is a disease that often goes undiagnosed," explained IRSS chief executive, Ann Tyrrell Kennedy.

In fact, research conducted by the IRSS 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, however there is an extreme shortage of consultant rheumatologists in Ireland, which can make diagnosis even more difficult.

"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. We are 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 hospital with UCD," Ms Tyrrell Kennedy said.

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," Ms Tyrrell Kennedy said.

For further information or to obtain a scleroderma information card, log on to www.irishraynauds.com or call (01) 202 0184.