The American Lung Association, CHEST Foundation and the Foundation for Sarcoidosis Research (FSR) teamed up to bring greater awareness to sarcoidosis and encourage patients to be more proactive in their treatment programs.
The joint effort, launched in April — National Sarcoidosis Awareness Month — is part of the fourth annual “Seek Answers. Inspire Results“ campaign and includes new e-learning modules, digital gatherings, and patient education materials.
Sarcoidosis, estimated to affect more than 200,000 people in the U.S., can impact almost any organ, but typically the lungs, lymph nodes, eyes and skin are involved.
It is important that patients openly discuss their disease with their physician to best understand their treatment options and participate in creating a personalized plan.
“Sarcoidosis continues to perplex both patients and doctors. Each case of sarcoidosis is unique, which makes it difficult to diagnose because symptoms vary and often mimic those of other diseases,” Doreen Addrizzo-Harris, MD, CHEST Foundation president-elect and a trustee, said in a press release. “While many patients do not experience serious health problems, 30 to 40 percent … have a persistent condition that may require personalized treatment.”
This year’s campaign is larger than previous years, with a goal of providing “patients, caregivers and clinicians with even more information, tools and treatment options,” Addrizzo-Harris added.
One such tool is the “Sarcoid Five,” a list of five questions designed to guide patient-doctor conversations and help patients better understand their treatment options and be involved in a personalized care plan designed with their disease characteristics in mind. Another is a “informational toolkit” — one for patients and another for clinicians — available for download.
Better understanding is important, because sarcoidosis’ symptoms are easily mistaken for other conditions.
“Many people with pulmonary sarcoidosis think they have the flu or a respiratory infection before they’re diagnosed with sarcoidosis,” said Albert Rizzo, senior medical advisor to the American Lung Association, adding that its symptoms “can include cough, shortness of breath, chest pain or wheezing.”
The three institutions are also offering webinars, online support communities, and FSR conferences throughout the U.S. to create awareness and promote conversations among healthcare providers, patients and caregivers.
“By working together to ensure that individuals living with sarcoidosis are well-resourced and engaging all stakeholders as partners in raising public awareness for sarcoidosis, this campaign assures patients and their loved ones that they are not alone,” said Ginger Spitzer, executive director of FSR.
Throughout April, sarcoidosis patients are invited to join the conversation and spread the word by downloading a social media badge at the Seek Answers. Inspire Results website.