World Scleroderma Day 2018

World Scleroderma Day is a global event, celebrated each year on June 29th. 

Scleroderma is a complex, autoimmune disease of the blood vessels and connective tissue.1 PAH is a well-recognised complication of systemic sclerosis (SSc) and is the leading cause of death in these patients.2,3

June is scleroderma awareness month, and every year on June 29th, people from countries all over the world come together to raise awareness of this disease.

This year marks the tenth World Scleroderma Day, since its beginning in 2009 after the 1st Systemic Sclerosis World Congress was held in Florence, Italy.

The date was chosen in the memory of Paul Klee, a famous Swiss artist who suffered with systemic scleroderma. His work was strongly influenced by his illness and although he died on June 29th 1940, he continues to be an inspiration to many patients. 

This year, Actelion collaborated in an awareness-raising campaign with Scleroderma & Raynaud’s UK (SRUK), the only UK charity dedicated to improving the lives of people with scleroderma & Raynaud’s phenomenon. Patients were invited to take part in a Paul Klee-inspired art class where they could share their personal stories of living with scleroderma. The insights shared by the participants clearly highlighted the importance of continued support for patients, and emphasised the need for greater understanding of the disease among healthcare professionals. 

Watch the video below to hear four inspirational women discuss their experiences of living with the condition.

As with other types of PAH, PAH associated with scleroderma can be difficult to diagnose, as symptoms at disease onset are mild. The complex nature of SSc can also make interpretation of new symptoms difficult.3 Click here to learn more about how screening for PAH may benefit patients with SSc.

References

  1. Pattanaik D, et al J Inflamm Res. 2011;4:105–25
  2. McGoon M, et al. Chest 2004; 126:14S–34S
  3. Morrisroe et al. Arthritis Res Ther 2017;19:42

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