New initiative raises awareness of scleroderma through real-life stories of those living with the rare disease

Ridgefield, Conn., February 16, 2018 – Boehringer Ingelheim today unveils “More Than Scleroderma^™: The Inside Story,” a new global initiative that highlights the importance of understanding the ‘inside story’ of each individual living with scleroderma, also known as systemic sclerosis. The new effort, with support from the Scleroderma Foundation, aims to raise awareness of the disease, dispel misperceptions and to provide important resources to support and guide those on their journey with the disease.

The new website https://www.morethanscleroderma.com/us/, which launches today in tandem with the initiative, features a powerful collection of photographs and video profiles of 10 people across the United States living with scleroderma. Mother and daughter Paige and Caitlyn St. Pierre from Larose, Louisiana, are two of those with the disease whose inspiring stories are highlighted on the website.

Paige, a school librarian, wife and mother of three, was diagnosed with scleroderma in 2010. Determined not to let her fear of the disease affect her and her family, she quickly connected with others living with the disease through online support groups and eventually found her way to a scleroderma specialist who was able to help manage her symptoms. One year later, Paige noticed that her youngest daughter Caitlyn, who was just 14 years old at the time, was exhibiting some of the same telltale signs and symptoms of scleroderma she had experienced herself. Shortly thereafter, Caitlyn was diagnosed with scleroderma and, since then, the two have worked together to face their new reality with a positive outlook.

“We both have this disease, but there is no way that we’ll ever allow scleroderma to stop us from doing the things we love,” says Paige. “We didn’t want to allow this condition to take charge of us, we wanted to take charge of it – so, we decided not to be victims – but victors.”

Scleroderma typically affects women in the prime of their lives, between ages 25 and 55, like Paige. Most people with the disease will develop some degree of lung scarring, or interstitial lung disease (ILD). When the disease’s signature thickening and scarring develops in vital organs, such as the lungs, there are potentially debilitating and life-threatening consequences. Currently, there are no FDA-treatments for treating lung fibrosis associated with scleroderma.

Scleroderma Foundation Encourages Supportive Action

Robert Riggs, chief executive officer of the Scleroderma Foundation, the leading advocacy organization for people in the U.S. living with scleroderma and their families, values the opportunity for the public to engage in raising awareness of this rare disease.

“Many people don’t realize that scleroderma is much more than a skin disease, and these inspiring stories may help to dispel that misperception and educate others about the totality of scleroderma’s life-changing impact,” said Riggs. “The greater the awareness, the more likely it is that those affected by scleroderma will gain access to the support and care that are so critical in living with this disease.”

For more information on the “More Than Scleroderma: The Inside Story” initiative, visit https://www.morethanscleroderma.com/us/ and help raise awareness of the disease by sharing the photo and video content on your social media channels.

About Scleroderma and Interstitial Lung Disease
Scleroderma, also known as systemic sclerosis, is a rare disease characterized by thickening and scarring of connective tissue throughout the body. 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.

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. 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.

About the Scleroderma Foundation
The Scleroderma Foundation is the national organization that helps people with scleroderma - and their families and friends - cope with the disease through support groups, physician referrals, and education information. The Foundation was formed Jan. 1, 1998, and is headquartered in Danvers, MA. It is a 501(c)(3) non-profit organization dedicated to serving the interests of people living with scleroderma and their families. The Foundation has a network of 20 chapters and 160 support groups committed to carrying out the three-fold mission of support, education and research. An active Medical and Scientific Advisory Board, comprised of internationally known scleroderma experts, assists the Foundation in providing research and medical related information to patients, medical professionals and other interested parties. The Foundation is the largest nonprofit funder of peer-reviewed medical research besides the federal government, and makes at least $1 million available each year for new research grants to find the cause and cure for scleroderma. 

For more information about the Scleroderma Foundation, visit www.scleroderma.org or call (800) 722-HOPE (4673)

About Boehringer Ingelheim
Boehringer Ingelheim Pharmaceuticals, Inc., based in Ridgefield, CT, is the largest U.S. subsidiary of Boehringer Ingelheim Corporation.

Boehringer Ingelheim is one of the world’s top 20 pharmaceutical companies. Headquartered in Ingelheim, Germany, the company operates globally with approximately 50,000 employees. Since its founding in 1885, the company has remained family-owned and today creates value through innovation for three business areas including human pharmaceuticals, animal health and biopharmaceutical contract manufacturing.

Boehringer Ingelheim is committed to improving lives and providing valuable services and support to patients and their families. Our employees create and engage in programs that strengthen our communities. Please visit our website to learn more about how we make more health for more people through our Corporate Social Responsibility initiatives.

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