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

‘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.

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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).^1,2,3 Systemic sclerosis affects an estimated two million people worldwide, mostly women in the prime of their lives between 25 and 55 years of age.^3,4,5

"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.”

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The campaign photographer: Alison Romanczuk

‘The Inside Story’ portrait photographs capture the unique personalities of people living with systemic sclerosis (scleroderma). Photographer and sarcoma survivor Alison Romanczuk explains how she approached the project: “There is always more beneath the surface, and I want to invite people to see beyond physical appearances. While identity and body image are important themes to my work, ultimately I'm deeply curious and want to bring personalities and stories to life through the lens.” Alison added, “I hope that these new photographs raise awareness about the disease by showing the true colours of these bright and inspirational individuals.”

Intended audiences

This press release is issued from our Corporate Headquarters in Ingelheim, Germany and is intended to provide information about our global business. Please be aware that information relating to the approval status and labels of approved products may vary from country to country, and a country-specific press release on this topic may have been issued in the countries where we do business.

For references and notes to editors, please visit: www.boehringer-ingelheim.com/press-release/ssc-inside-story

For more information, please visit: www.boehringer-ingelheim.com/respiratory/ssc-ild

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Contact information

Boehringer Ingelheim
Corporate Communications
Media + PR
Manuela Kabus
Phone: +49 6132 – 77 96121
Fax: +49 6132 – 77 6601
Email: press@boehringer-ingelheim.com