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Ignore No More:

African American Women & Sarcoidosis Campaign

“I'm speaking out because I care about my community.  We can no longer afford to ignore.”

– Jeryl Prescott Gallien. 

We are honored to be working with actor, Jeryl Prescott Gallien to raise awareness of sarcoidosis in African American women through the Ignore No More Campaign. Prescott Gallien is best known for her roles in AMC’s “The Walking Dead” (Jacqui), DC Universe’s “The Swamp Thing” (Madame Xanadu), Netflix’s Resort to Love (Naomi King), and most recently “All the Queen’s Men” (Judge Martha), currently streaming on BET Plus. 

Prescott Gallien’s passion for raising awareness for sarcoidosis among African American women stems from her own difficult journey and her recent diagnosis of cardiac sarcoidosis, in addition to her previously diagnosed pulmonary and ocular sarcoidosis. View the video below to hear more about her journey with sarcoidosis and why she’s speaking out.  

To learn more about sarcoidosis and how it impacts your organs click here. Cardiac sarcoidosis is the second leading cause of death among sarcoidosis patients, yet it is severely underdiagnosed. Learn more here.  

African American women bear the greatest burden when compared to all other groups impacted by sarcoidosis. 

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.  

The Foundation for Sarcoidosis Research (FSR) launched the Ignore No More: African American Women & Sarcoidosis (AAWS) Campaign to address these disparities by engaging our sarcoidosis community – patients and providers – to better understand how sarcoidosis impacts African American women.

By raising awareness, FSR hopes to improve diagnosis, treatment, and outcomes for  this population.

African American women:

Experience the highest incidence of sarcoidosis in the US compared to any other group.   

Have an increased  hospitalization rate  10-18  times  higher than Caucasians,  and more than double that of  African American  men.    

Have a mortality rate 12 times higher than that of Caucasians, and one and a half times higher than  that of  African American  men.    

Meet the Faces of the Campaign

We are thrilled to introduce the two committees leading this effort as advisors and advocates for the campaign. Learn more about our passionate Women of Color Patient Advisory Committee and esteemed Women of Color Clinical Advisory Committee.

Thank You to Our Sponsors

This campaign is made possible through the generous support of our sponsors Global Genes and Mallinckrodt Pharmaceuticals. 

Our Media Sponsors

Our Partners

Sources:

  • Cozier, Y. C., Berman, J. S., Palmer, J. R., Boggs, D. A., Serlin, D. M., & Rosenberg, L. (2011). Sarcoidosis in black women in the United States: data from the Black Women's Health Study. Chest139(1), 144-150.
  • Hena, K. M. (2020). Sarcoidosis Epidemiology: Race Matters. Frontiers in immunology, 11.
  • Mirsaeidi M, Machado RF, Schraufnagel D, Sweiss NJ, Baughman RP. Racial difference in sarcoidosis mortality in the United States. Chest. 2015 Feb;147(2):438-449. doi: 10.1378/chest.14-1120. PMID: 25188873; PMCID: PMC4314818.
  • Kearney GD, Obi ON, Maddipati V, Mohan A, Malur A, Carter JC, Thomassen MJ. Sarcoidosis deaths in the United States: 1999-2016. Respir Med. 2019 Mar;149:30-35. doi: 10.1016/j.rmed.2018.11.010. Epub 2018 Nov 16. PMID: 30471894.
  • Swigris JJ, Olson AL, Huie TJ, Fernandez-Perez ER, Solomon J, Sprunger D, Brown KK. Sarcoidosis-related mortality in the United States from 1988 to 2007. Am J Respir Crit Care Med. 2011 Jun 1;183(11):1524-30. doi: 10.1164/rccm.201010-1679OC. Epub 2011 Feb 17. PMID: 21330454; PMCID: PMC3137141.
  • Luisetti, M., Beretta, A., & Casali, L. (2000). Genetic aspects in sarcoidosis. European Respiratory Journal16(4), 768-780.
  • Gideon NM, Mannino DM. Sarcoidosis mortality in the United States, 1979–1991. Am J Med 1996; 100: 423–427. 3. Reich JM
  • Gideon, N. M., & Mannino, D. M. (1996). Sarcoidosis mortality in the United States, 1979–1991: an analysis of multiple-cause mortality data. The American journal of medicine100(4), 423-427.
  • Foreman, M. G., Mannino, D. M., Kamugisha, L., & Westney, G. E. (2006). Hospitalization for patients with sarcoidosis: 1979-2000. Sarcoidosis, vasculitis, and diffuse lung diseases: official journal of WASOG23(2), 124-129.
  • Moor, C. C., Van Manen, M. J. G., van Hagen, P. M., Miedema, J. R., van den Toorn, L. M., Gür-Demirel, Y., ... & Wijsenbeek, M. S. (2018). Needs, perceptions and education in sarcoidosis: a live interactive survey of patients and partners. Lung196(5), 569-575.
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