Sarcoidosis (pronounced SAR-COY-DOE-SIS) is a complex and rare inflammatory disease that affects approximately 1.2 million people worldwide and an estimated 175,000 people in the U.S.
In those who have it, tiny clumps of inflammatory cells called granulomas may form in potentially any organs, including the lungs and heart, causing a host of problems from chronic coughing to fatigue. Yet, despite increasing advancements in research, sarcoidosis remains difficult to diagnose and treat, and it has no known cure.
The Foundation for Sarcoidosis Research (FSR), a partner of The Heart Truth® Healthy Hearts Network, is the leading international organization dedicated to finding a cure and improving care for sarcoidosis patients. Since its founding in 2000, FSR has raised over $6 million for sarcoidosis research initiatives, which has deepened the understanding of sarcoidosis, its causes, and its impact on patients.
Addressing cardiac sarcoidosis in patients
Cardiac sarcoidosis affects the heart when clusters of granulomas form in the heart’s tissue. Cardiac sarcoidosis is diagnosed in 2-5% of patients with systemic sarcoidosis (sarcoidosis that impacts multiple organ systems). However, some postmortem reports show that the incidence of cardiac sarcoidosis in the U.S. may be as high as 20-30%.
Potential symptoms of cardiac sarcoidosis include:
- Irregular heartbeats, which can feel like palpitations or skipped beats
- Lightheadedness or fainting
- Shortness of breath, coughing, or chest tightness
People often spend years, in search of the cardiac sarcoidosis diagnosis. Mary McGowan, FSR’s chief executive officer, says her organization is dedicated to working with patients, clinicians, researchers and the community to find ways to close this gap and help patients connect with sarcoidosis specialists improve their chance for effective treatment and better patient outcomes. “Inaccurate diagnoses equal lost time and lost organ function, which cannot be regained,” she explained.
“Too many times we hear from families whose loved one died suddenly from undiagnosed cardiac sarcoidosis,” McGowan said. “Through our partnership with The Heart Truth, we aim to make it so no families need suffer that kind of loss.”
McGowan noted that FSR is also funding and coordinating a groundbreaking multi-site international study exploring the importance of enhanced screening methods for early identification of cardiac sarcoidosis. This study has already enrolled half the targeted number of participants.
Improving patients’ quality of life
FSR offers extensive support, educational programming, and resources to patients and clinicians to improve diagnosis and treatment management. Its patient registry, which now has more than 5,400 participants, has helped shed light on how sarcoidosis affects a patient’s quality of life and financial well-being. FSR’s annual survey of registry members will provide useful longitudinal data, and the organization is hoping to expand the survey to capture the mental and emotional burden of the disease.
To empower patients so their voices are heard, FSR developed a Patient Advisory Committee, Speakers Bureau, and the Women of Color Patient Advisory Committee. These groups promote awareness and support FSR’s educational programming, community outreach, and marketing.
FSR also has a volunteer program with nearly 100 community-level volunteers, as well as virtual support groups and 1:1 peer support navigator for those newly diagnosed or dealing with the complexities of the disease.
“FSR believes that the patient should be at the center of all drug development, education and awareness, and policy development,” McGowan said. “We train patients to share well-crafted advocacy stories to empower them to motivate change, activate the community, and amplify their needs.”
Addressing disparities in sarcoidosis
FSR is dedicated to improving the outcomes of African Americans who are disproportionately impacted by the disease and often suffer the worst outcomes as compared to any other group. In addition, African Americans’ hospitalization rate is 10-18 times higher than whites, and more than double that of African American men. Additionally, they are 12 times more likely than whites and 1½ times more likely than African American men to die of sarcoidosis.
To increase awareness and understanding of these disparities and lay the groundwork to improved care, FSR launched the Ignore No More: African American Women & Sarcoidosis campaign. This 6 month campaign has reached over 500,000 individuals, McGowan said, and has spurred interest in improving health care and health policy in ways that better help African American women.
“We are now moving on to the second phase of this work, which will focus on enrolling more African Americans in clinical trials,” McGowan added. “In order to develop better treatments and to find a cure, we must understand how and why this disease impacts African Americans at a higher rate and with more severity.”
To further support the Ignore No More national campaign, FSR created the Women of Color Advisory Committee, comprised of 14 African American women living with sarcoidosis, their care partners, a leading epidemiologist in African American women’s health, and three clinical experts in sarcoidosis.
Partnering with The Heart Truth
The Heart Truth has been one of FSR’s most valued partners in the Ignore No More campaign, McGowan said, through its efforts to amplify messaging by sharing infographics, webinar information, and an educational PSA on sarcoidosis. FSR also collaborates with The Heart Truth to educate the public about the importance of heart health in general. For example, the partners work together in both February for American Heart Month and in September for World Heart Day.