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Associations from all over Europe unite with FESCA - the Federation of European Scleroderma Associations aisbl – to celebrate World Scleroderma Day on June 29.
“This is the most important date in the year for scleroderma associations”, explains Annelise Roennow, President of FESCA. “It is a day that has been celebrated now for a decade: 10 years in which people with scleroderma have succeeded in making their voices heard”.
Scleroderma is a rare, chronic autoimmune disease in which early diagnosis can make all the difference. Damage to the connective tissue includes not only the skin, but also vital organs such as the lungs, heart, and kidneys. Quality of life is severely impacted by this damaging illness, to the extent that it is difficult even to do simple, fundamental actions like breathing, eating, and even smiling.
“When even everyday gestures become tough”, continues Ms. Roennow, “it’s easy to feel alone and depressed. For this reason we chose to represent in our new World Scleroderma Day video the i”mportance of continuing to smile, and of joining the community of scleroderma people that is locally represented by 25 associations in 19 countries.
Scleroderma affects mostly women in the 35-50 age-group, but anyone can be affected, including men and children. With an increase in early diagnosis, and thanks to a greater recognition of the scleroderma alarm-bells, the number of young people who discover early that they have scleroderma is now growing.
"We decided to make a video that would speak to younger people,” concludes Annelise Roennow. “Girls and boys in the middle of growing up have more difficulties in finding their lives completely changed by scleroderma".
The message of the new video, translated into 15 languages and shot in the beautiful location of the ancient university of Milan by director Alessandro Sigismondi, is clear and direct: people with scleroderma are not alone.
"There is still a long way to go, and still many things that people with scleroderma need, but the hard work of the associations and the collaboration with the scientific community can make all the difference. Local groups are able to provide support, information, and guidance, and refer new patients to specialized centers, where trained doctors are able to take care of patients with this disease”.
FESCA shines a spotlight on scleroderma. With this new communication campaign, which includes the video but also other communication tools, we hope that millions of people will help us to spread information about this rare disease and the alarm-bells that will increase early diagnosis and treatment.
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