Patient Groups Team Up to Create First ILD Day on Sept. 15
Aiming to get people at risk for lung disorders more quickly diagnosed and treated, nine patient organizations — including the Pulmonary Fibrosis Foundation (PFF) — are collaborating to present the first Interstitial Lung Disease (ILD) Day, to be held Wednesday, Sept. 15.
The goal of the daylong observance is to increase awareness of ILDs, of which there are 50,000 new U.S. cases annually, according to the PFF.
Advocates note there are more than 200 types of ILD, an umbrella term for a group of disorders characterized by lung inflammation and scarring — conditions that make it hard to breathe. Pulmonary fibrosis (PF) manifests in many types of ILD. Together, PF and ILD affect more than 250,000 U.S. residents.
However, there is little knowledge of ILDs, even among patients.
“Awareness of interstitial lung disease remains relatively unknown in the community, and because its symptoms are similar to other common respiratory diseases, it can be very difficult to diagnose,” William T. Schmidt, the PFF’s president and CEO, said in a press release.
“We created ILD Day, in partnership with eight other organizations, to raise awareness so at-risk patients and those experiencing symptoms can be diagnosed more quickly to receive proper care and treatment to manage the condition,” Schmidt said.
With its Sept. 15 launch date, the first ILD Day will be held during Pulmonary Fibrosis (PF) Awareness Month, held annually to bring global attention to the rare lung disease. The PFF is spearheading U.S. efforts for disease awareness, using the theme “Growing Stronger.”
For ILDs, common symptoms include shortness of breath, dry cough, fatigue, weakness, chest discomfort, and “clubbing” of the fingertips. Loss of appetite and unexplained weight loss also are common.
Patients with some disorders, including those with scleroderma, rheumatoid arthritis, myositis, sarcoidosis, and Sjögren’s syndrome, are at a higher risk of developing ILDs. Such individuals should discuss their risk with their physicians and learn more about the disease, the PFF said.
The other organizations that have partnered to present ILD Day include the Arthritis Foundation, the Myositis Association, the Foundation for Sarcoidosis Research, PF Warriors, the Scleroderma Foundation, the Sjögren’s Foundation, the Scleroderma Research Foundation, and the Wescoe Foundation for Pulmonary Fibrosis.
To enhance understanding of ILD and its symptoms and treatments, an educational webinar will be presented on Sept. 15. ILD Day is being sponsored by Boehringer Ingelheim, the marketer of Ofev (nintedanib) — an approved treatment for idiopathic pulmonary fibrosis (IPF), which also is an ILD.
Watch the PFF’s Instagram site for more webinar information and a registration link. There also will be a survey to better understand existing ILD awareness, plus a social media campaign.
“It is imperative that we all help expand the understanding of ILDs, and we are proud to work with these organizations to broaden the scope of our community outreach,” said Al Masucci, executive director and therapeutic area head of Boehringer’s respiratory IPF/ILD, clinical development and medical affairs.
“Sponsoring ILD Day allows us to provide meaningful resources for patients and doctors and to help improve health,” Masucci added.