The Federation of European Scleroderma Associations (FESCA) is calling for equality for fair treatment and care across Europe for people with Scleroderma.
In the patient declaration, released on Wednesday on the occasion of World Scleroderma Day, FESCA says it is launching a "Find the Light to Bloom" campaign to shine a light on the unmet needs of people living with scleroderma and urges policy makers to prioritise improving diagnosis, treatment and quality of life.
Scleroderma also known as systemic sclerosis (SSc), (REF) is a rare disease that damages the skin, internal organs, blood vessels and connective tissue, causing vascular abnormalities in the skin and joints.
Some common complications, notably interstitial lung disease and pulmonary arterial hypertension, represent a high risk of mortality.
Referring to the daily challenges faced by people with Scleroderma, the federation notes that they include a slowdown in early diagnosis, lack of timely access to treatment and standard procedures, and a lack of quality data and patient registries.
The declaration explains that despite being known to rheumatologists across the EU, scleroderma is relatively invisible to the European community of GPs and public health officials.
According to Sue Farrington, President of the federation, lack of awareness and knowledge is a major issue, affecting the time it takes for the condition to be diagnosed. The declaration proposes a number of recommendations to address these challenges as well as the development of diagnostic guidelines to help healthcare professionals make early diagnoses and the creation of national patient registries to collect patient data.
It is thought that scleroderma affects between 10 and 35 people in every 100,000 in Europe. There is currently no cure for this rare disease, but effective treatments are available for some types of the disease. The most common treatments are immunosuppressive therapies, which expose patients to a high risk of viral or bacterial infections.
Source: CNA
Contents of this article including associated images are belongs Cyprus Times
Views & opinions expressed are those of the author and/or Cyprus Times
Source
