The third annual national awareness campaign “Seek Answers. Inspire Results” aims to bring attention to patients with sarcoidosis. The campaign, a collaboration between the CHEST Foundation and the Foundation of Sarcoidosis Research (FSR), is set to coincide with the National Sarcoidosis Awareness Month in April.
Although sarcoidosis is a treatable condition based on good medical care, an ongoing dialogue between patients and their clinical physicians regarding treatment options is vital in order to prevent lasting damage.
To facilitate such discussion, the “Seek Answers. Inspire Results.” campaign has created an online toolkit that provides resources about sarcoidosis. The toolkit is designed to generate conversations within the sarcoidosis community, and to empower patients to take ownership of their own unique condition.
One of the highlights from the toolkit includes the “Sarcoid Five,” which is a list of questions that patients can use in order to initiate a conversation with their healthcare providers regarding treatment options and personalized care plans.
“Although sarcoidosis was identified more than 150 years ago, it is still considered an elusive and perplexing disease because it can present itself in different ways depending on the individual,” Doreen Addrizzo-Harris, MD, CHEST Foundation president-designate and trustee, said in a press release. “For many, the symptoms may be short-lived in some, but may cause life-threatening illness in others. Many patients need special personalized treatment to control symptoms. By generating an awareness campaign around sarcoidosis, we hope to provide patients with information and treatment options.”
The campaign hopes to generate awareness about sarcoidosis on social media, and patients are encouraged to update their profile photos for the month of April with the campaign awareness badge, which is available for download on their website.
“We are proud to partner with the CHEST Foundation again this year as we aim to continue building awareness about this complex disease and provide key resources to the sarcoidosis community,” said Ginger Spitzer, executive director of FSR. “Diagnosing sarcoidosis can be a long and frustrating process for patients and can also be quite difficult for people living with the disease. In fact, 25-30 percent of individuals have persistent, chronic symptoms requiring ongoing treatment. We want them to understand they are not alone as they navigate the condition with support and a tailored action plan,” Spitzer said.
Sarcoidosis is a multi-system, inflammatory disease that causes autoimmune dysfunction. The disease leads to the development of granulomas (or groupings of cells) that form within different organ systems, potentially impairing their function and leading to a host of complications.
Sarcoidosis can affect any organ system in the body. However, it frequently affects the lungs and lymph nodes. The condition is most common in patients between the ages of 20 and 40 years, and tends to have more severe complications in African-Americans.