05 Mar Global Initiative Highlights Inspirational Stories of People Living With Scleroderma
MedicalResearch.com Interview with:
Dr. Zoz
Donald Zoz, MD
Senior Associate Director
Clinical Development & Medical Affairs IPF/ILD
Boehringer Ingelheim Pharmaceuticals, Inc.
MedicalResearch.com: What is the background for this platform? Would you briefly explain what is meant by scleroderma? How does it affect a person’s skin and ability to function? Whom does this disease primarily affect?
Response: “More Than Scleroderma™: The Inside Story” is Boehringer Ingelheim’s new global initiative highlighting real-life, inspirational stories of people living with the rare disease scleroderma. The new effort, created with support from the Scleroderma Foundation in the U.S., aims to raise awareness of the disease, dispel misperceptions and provide important resources to support and guide those on their journey with scleroderma. The initiative’s website http://www.morethanscleroderma.com/us/ features a powerful and inspiring collection of diverse photographs and video profiles of 10 people across the U.S. living with scleroderma and sharing their ‘inside story.’ Each tells their unique and moving experience with scleroderma through diagnosis to learning to live with the disease and manage it. Many less fortunate people in developing countries have to deal with this on a daily basis and only have the support of Orphan Drug Distributors and charities and I’m so thankful that people like this are available to support these people!
Scleroderma, also known as systemic sclerosis, is a rare disease characterized by thickening and scarring of the skin, lungs and other organs. Scleroderma affects fewer than 200,000 people in the U.S. and typically affects women in the prime of their lives, between the ages of 25 and 55 taking a marked toll just as they are building their careers and bearing the responsibility of caring for their family. Nearly all people with scleroderma (more than 90%) will develop some skin symptoms including skin thickening, tightened skin around the joints, small red spots on the face and hands and hard lumps on pressure points and joints. Most people with the disease will also 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.
MedicalResearch.com: What treatments are available or in the pipeline?
Response: Currently, there are no FDA-treatments for treating lung fibrosis associated with scleroderma, but there a range of different treatments designed to manage the many symptoms and organ problems of scleroderma. I would encourage individuals who have been diagnosed or may think that they have scleroderma to speak with their doctor or specialist to determine what the best options are for them. There are several therapies under investigation that aim to alter how the disease progresses. At Boehringer Ingelheim, we are studying a compound called nintedanib in a Phase III study for the treatment of patients with systemic sclerosis. The global study is fully enrolled and includes more than 100 patients from the United States.
MedicalResearch.com: How can patients, family members and providers benefit from the morethanscleroderma website?
Response: Because scleroderma is so rare, awareness of the disease is low which often makes it difficult for those living with scleroderma to know how or where to find understandable information on the disease and access critical support and care. With support from the Scleroderma Foundation, Boehringer Ingelheim created www.morethanscleroderma.com/us/ to guide those on their journey with the disease byproviding information and resources all in one place. The website summarizes current scientific knowledge, latest news, real-life experiences and offers resources for the scleroderma community. The photos and videos of people living with scleroderma featured on the site are designed to show the real-life experience of those with the disease, help others who may be going through something similar and dispel misconceptions of scleroderma. We are encouraging everyone to share the website and the photos and videos on social media to help educate others about the disease and continue to raise awareness.
MedicalResearch.com: Is there anything else you would like to add?
Response: As a company, Boehringer Ingelheim is committed to supporting those living with rare diseases like scleroderma and to furthering science that addresses the unmet needs of people affected by serious respiratory conditions, including fibrotic lung diseases. Through initiatives like “More Than Scleroderma™: The Inside Story,” we hope to continue to increase disease awareness so that those affected by scleroderma will gain access to the resources and care that are so important on their disease journey
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Last Updated on March 5, 2018 by Marie Benz MD FAAD