‘More than Systemic Sclerosis: The Inside Story’ – patients reveal the unseen impact of lung fibrosis

  • An online gallery of photo and film showcases uplifting stories of people living with systemic sclerosis (SSc) at boehringer-ingelheim.com/respiratory/systemic-sclerosis/inside-story
  • Experts call for more public awareness on the disease and about how individuals are affected by SSc
  • SSc is a rare disease which mostly affects women in the prime of their lives, involving the skin, lungs and other organs

“The disease wants to throw me down so I resist and do the exact opposite. I love life. But at diagnosis I wanted to give up. I became unable to walk even 20 metres because of the impact of the disease on my lungs. So I learned to fight. I’m very proud of the woman I am.”

– Rute from Portugal, living with systemic sclerosis

‘More than Systemic Sclerosis: The Inside Story’ launches today to mark World Scleroderma Day. This global initiative highlights the importance of understanding the ‘inside story’ of each individual living with systemic sclerosis, and to increase awareness of the potential serious consequences when fibrosis develops in vital organs such as the lungs.

The new photography and film gallery is available at www.boehringer-ingelheim.com/respiratory/systemic-sclerosis/inside-story and features eight patients from seven countries, each telling their story about living with this rare condition.

Systemic sclerosis is a disfiguring, disabling and potentially fatal rare disease that causes scarring (fibrosis) of the skin (also known as ‘scleroderma’) and of major organs, such as the lungs (lung fibrosis).Systemic sclerosis affects an estimated two million people worldwide, mostly women in the prime of their lives between 25 and 55 years of age.

“Beneath the visible, external effects of systemic sclerosis, many people with the disease also live with internal organ involvement including lung scarring (fibrosis) that can make it difficult to breathe and perform everyday activities. Patients with lung involvement face an uncertain future as the fibrosis can be debilitating and may become life-threatening,” said Professor Christopher Denton, Consultant Rheumatologist at the Centre for Rheumatology at the Royal Free Hospital and University College London, UK.

This global initiative has been developed by Boehringer Ingelheim, with the support of global and local patient organisations to help share patients’ unique stories. Annelise Rønnow, President of the Federation of European Scleroderma Associations (FESCA) commented: “People living with systemic sclerosis are not defined by their disease. By sharing the stories of real people, this campaign demands that patients are seen for who they really are. We hope that through greater awareness and education, we can better support those affected by the disease so they can aim to lead happy, fulfilling lives.”