Undiagnosed & Untreated: Realities of Systemic Sclerosis in Europe Today

The Federation of European Scleroderma Associations (FESCA) is calling for equity of treatment and care across Europe for people with scleroderma. In a new position paper, being launched today on World Scleroderma Day, FESCA presents the patient pathway challenges faced by those living with this life limiting disease. These challenges include a delay in diagnosis, lack of timely access to treatment and standardized pathways, as well as lack of quality data and patient registries.

To raise additional awareness about scleroderma (also known as systemic sclerosis or SSc), the Federation is launching a campaign, “Find the Light to Bloom”, to shine a light on the unmet needs of people living with scleroderma and urging policy-makers to make improving diagnosis, treatment and the quality of life a priority. The position paper, “Undiagnosed and untreated: Realities of Systemic Sclerosis in Europe today” explains that despite being known to rheumatological specialists across the EU, scleroderma is relatively invisible among the European community of general practitioners and public health officials.

World Scleroderma Day takes place every year on 29 June and is represented by the symbol of a sunflower, which turns to the sun to bloom, recognising the bravery of those who live with scleroderma, and demanding equal treatment and equal care for the community both across Europe and worldwide. By communicating what it means to have this disabling disease, FESCA’s new campaign, “Find the Light to Bloom” builds on the idea of the sunflower and aims to empower those living with scleroderma, advocating that they can thrive given the right conditions.

Sue Farrington, President of FESCA said: 

“We know the challenges faced by our community and they are not new. Lack of awareness and knowledge is a major issue, impacting on the time it takes to diagnose the condition, which affects timely access to treatment and care. Our position paper proposes a series of recommendations to address these challenges. Together we believe we can create the right conditions to help our community bloom.”

Solutions do exist that can improve care and the quality of life for scleroderma patients, as disclosed in the position paper. These include developing diagnosis guidelines to assist healthcare professionals in making earlier diagnoses, building national patient registries to collect patient data, and adopting a hub and spoke approach to care to link patient conditions with specialist care. Yet for these solutions to become a reality, there is a need for political will and action if they are to be implemented. Find out more about this complex condition and how the situation for thousands of patients living with scleroderma can be improved.

About scleroderma

Scleroderma, also known as systemic sclerosis (SSc), (REF) is a rare disease that damages the skin and internal organs, blood vessels and connective tissue, causing vascular abnormalities in the skin and joints. Some common complications, mainly interstitial lung disease and pulmonary arterial hypertension, represent a high risk of mortality. 

It is thought that scleroderma affects between 10 and 35 people in every 100,000 in Europe. The cause of scleroderma is not known, but medical professionals believe it is caused by an overactive immune system where the body attacks its healthy tissues, causing the overproduction of collagen, the primary structural protein in skin and other connective tissues.  

There is currently no cure for this rare disease, but effective offlabel treatments for some types of the disease are available. Most common treatments are immunosuppressant therapies, that expose patients to a high risk of viral or bacterial infections. Those living with scleroderma can face many challenges in their daily lives, which may include having to manage constant pain or discomfort. Beyond the physical challenges, the condition has a knock-on effect on these individuals’ personal lives, a profound effect on social relationships as well as family life. Their disease symptoms can even prompt them to change their working arrangements which can lead to economic and psychological strains, too.

About FESCA

FESCA, Federation of European Scleroderma Associations aisbl, acts at a pan-European level to promote and achieve its objectives in alignment with the aims of the national groups it represents. As an umbrella group, FESCA supports its member organisations to raise awareness of this debilitating condition and the unmet needs of the patient community, while the support of individual sufferers of scleroderma remains the sole remit of national organisations.