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

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 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.”

Links

https://www.boehringer-ingelheim.com/

https://www.morethanscleroderma.com/us/

Related posts

Leave a Comment