World Scleroderma Day 2018 - Families open up about supporting a loved one with scleroderma, in new video series
- Boehringer Ingelheim provides platform to families and loved ones of people living with scleroderma with new, insightful stories, sharing ways to cope with and best support a loved one living with this little known disease
- “I think the disease has brought us closer to each other… I can’t change the future but you have to look forward and don’t just see the downside in life.” – Juan, whose wife Monica has scleroderma
- Gallery of videos and portraits, providing more information about the impact of this rare disease at www.morethanscleroderma.com
Ingelheim, Germany, 29 June 2018 – Boehringer Ingelheim today reveals a new collection of unique, personal stories and portraits from family members supporting people living with scleroderma. The collection is part of the global ‘More Than Scleroderma’ initiative developed by Boehringer Ingelheim, with support from patient organisations, to raise awareness of this rare condition and provide information and resources for those affected.
Launched in 2017 with inspirational stories of scleroderma patients from around the world, this year the initiative has expanded to include personal stories of patients’ loved ones and family members. Their personal journeys, stories and insights contribute to the global discussion around the disease on World Scleroderma Day.
This year marks the tenth World Scleroderma Day, which focuses on bringing to light the experiences and struggles of patients living with scleroderma.
Juan, from Katrineholm in Sweden, has shared his story as part of the “More Than Scleroderma” initiative. His wife, Monica is living with scleroderma. He hopes to encourage and inspire other loved ones and family members who are supporting people with the disease, advising “You have to support them the best way you can, without it taking over their life.”
FESCA (The Federation of European Scleroderma Associations) has supported the initiative from the beginning. President Annelise Rønnow said:
“We are delighted that the ‘More than Scleroderma’ initiative has evolved to include perspectives and insights of close family members. We must not forget the huge impact scleroderma – or any serious disease – can have on families and friends. Talking about it openly and sharing experiences will help people learn to live with the disease and ensure that scleroderma won’t take their smile”.
About Scleroderma and Interstitial Lung Disease
Scleroderma, also known as systemic sclerosis, is a rare disease characterised by thickening and scarring of connective tissue throughout the body.1,2 It is estimated that up to 2.5 million people worldwide have scleroderma.3 Because scleroderma affects the connective tissue, symptoms can occur in any area of the body including the skin, muscles, blood vessels and internal organs, making it difficult to diagnose. The disease impacts four times as many women as men, and the onset of the disease typically occurs at a young age – between 25 and 55 years.4
Nearly all people with scleroderma have hardening and thickening of patches of skin. The disease also can cause scarring in the lungs, heart, and kidneys, which can be debilitating and may become life-threatening.1,2 When the disease affects the lungs, it results in some degree of lung scarring, or interstitial lung disease (ILD). Lung involvement, like ILD, is the leading cause of death among people with scleroderma.1,5
Boehringer Ingelheim is researching potential new treatments for this life changing condition. The Phase III SENSCIS™ trial (Safety and Efficacy of Nintedanib in Systemic SClerosIS)6 is fully enrolled with the aim to have results in 2019. This important trial is another example of the company’s ongoing commitment to improving the lives of patients living with devastating diseases.
Boehringer Ingelheim
Improving the health and quality of life of patients is the goal of the research-driven pharmaceutical company Boehringer Ingelheim. The focus in doing so is on diseases for which no satisfactory treatment option exists to date. The company therefore concentrates on developing innovative therapies that can extend patients’ lives. In animal health, Boehringer Ingelheim stands for advanced prevention.
Family-owned since it was established in 1885, Boehringer Ingelheim is one of the pharmaceutical industry’s top 20 companies. Some 50,000 employees create value through innovation daily for the three business areas human pharmaceuticals, animal health and biopharmaceuticals. In 2017, Boehringer Ingelheim achieved net sales of nearly 18.1 billion euros. R&D expenditure, exceeding three billion euros, corresponded to 17.0 per cent of net sales.
As a family-owned company, Boehringer Ingelheim plans in generations and focuses on long-term success, rather than short-term profit. The company therefore aims at organic growth from its own resources with simultaneous openness to partnerships and strategic alliances in research. In everything it does, Boehringer Ingelheim naturally adopts responsibility towards mankind and the environment.
More information about Boehringer Ingelheim can be found on www.boehringer-ingelheim.com or in our annual report: http://annualreport.boehringer-ingelheim.com.
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.
References
1 Solomon JJ, Olson A L, Fischer A, et al. European Respiratory Update: Scleroderma lung disease. Eur.Respir. Rev. 2013; 22: 127, 6–19.
2 Denton CP, Khanna D. Systemic sclerosis. Lancet. 2017 Apr 13
3 University of Michigan Scleroderma Program. What is Scleroderma? Available at: www.med.umich.edu/scleroderma/patients/scleroderma.htm. Last accessed June 2018.
4 Scleroderma Foundation. What is scleroderma? Available at: www.scleroderma.org/site/PageNavigator/patients_whatis.html#.V hgSaPlViko. Last accessed June 2018.
5 Vega CP, Solomon JJ,Brown KK, et al. Management of interstitial lung disease in systemic sclerosis. Int. J. Clin. Rheumatol. (2011) 6(5),503–515.
6 Clinical trial.gov. A Trial to Compare Nintedanib With Placebo for Patients With Scleroderma Related Lung Fibrosis. Available at: https://clinicaltrials.gov/ct2/show/NCT02597933. Last accesssed June 2018.