Living Proof Advocacy (LPA) is proud to partner this month with the Ignore No More campaign launched by the Foundation for Sarcoidosis Research (FSR) to raise awareness of the disease among African American women.
Sarcoidosis is a rare inflammatory disease characterized by the formulation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. When too many of these clumps form, they can interfere with the organs’ function. This leads to serious and sometimes fatal complications.
In terms of those impacted by sarcoidosis, African American women bear the greatest burden when compared to all other groups. They experience higher hospitalization and mortality rates, and are more severely impacted by the disease with more organ involvement and severe symptoms than Caucasians and African American men.
FSR launched the Ignore No More campaign to address these disparities by engaging both patients and providers to better understand how sarcoidosis impacts African American women.
An important component of the campaign is the advocacy provided by FSR’s Women of Color Patient Advisory Committee which is composed of 15 African American women, both patients and care partners, from across the U.S. The women attended an LPA Advocacy Start-up Series in 2021 to prepare and practice using their lived experiences to support the goals of the campaign. They now speak out using the powerful advocacy tool that only they have: their lived experience.
A recent voice to join in FSR’s advocacy efforts is that of actor Jeryl Prescott Gallien, best known for her roles in AMC’s “The Walking Dead,” and DC Universe’s “The Swamp Thing.” Prescott Gallien’s passion for the campaign stems from her own difficult journey, which includes a recent diagnosis of cardiac sarcoidosis, in addition to a previous diagnosis of pulmonary and ocular sarcoidosis.
“The campaign resonated with me because it is so multifaceted,” said Prescott Gallien. “It speaks to the patients: ‘no longer ignore your symptoms or needs.’ But it also speaks to the physicians and the medical community: ‘no longer ignore black women.’”
The actress, like all members of the Patient Advisory Committee, is committed to sharing her lived experience. “I’m speaking out because I care about my community. We can no longer afford to ignore.”
Visit the campaign page to learn more about the campaign and follow it on social media @stopsarcoidosis or Foundation for Sarcoidosis Research. If you’re preparing advocates for a similar initiative, check out LPA’s Advocate Start-Up Series.
