A $600,000 grant will help the Foundation for Sarcoidosis Research, known as FSR, advance investigations into this rare disease and address health disparities seen among African Americans with sarcoidosis. The three-year grant is part of the Chan Zuckerberg Initiative’s Rare as One Project. “The Foundation for Sarcoidosis…
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This Too Shall Pass
Like you, I’m not the only person that has daily issues living with sarcoidosis. As I tell some friends, every day is a new adventure. That adventure may include riding an emotional roller coaster, or feeling so upbeat and motivated that I’ll venture out to the gym for a…
The Foundation for Sarcoidosis Research (FSR) has launched the Coalition for Clinical Trial Equity, aimed at increasing the representation of Black and African American sarcoidosis patients in trials testing potential treatments. Despite Black Americans being 2.5 times more likely to have sarcoidosis than white Americans, these patients…
I used to be a notoriously late holiday shopper, scrambling in stores on Christmas Eve to complete my gift list to the amusement of my family. But life with sarcoidosis and my other chronic health conditions can be unpredictable. The holiday season adds to the challenges. That’s why this…
Pulmonary sarcoidosis is a sneaky character. Last week, I wasn’t feeling like myself. I was more out of breath than usual. I felt weak and could tell something wasn’t right with me. I had my son take me to the hospital, where I was admitted…
Sarcoidosis is a rare inflammatory disease characterized by the formation of clumps of inflammatory immune cells called granulomas. These build up in different tissues and organs in the body affecting their ability to function properly. They can cause permanent damage if untreated. Although there is currently no cure…
This holiday season was not what I had expected. As I get older, I guess I have lost a lot of the childish excitement I used to feel during the holidays. As with most people, life gets in the way. Things change, and we lose…
Sarcoidosis is a rare inflammatory disease where the immune system is overactive. It is characterized by clumps of immune cells, called granulomas, which build up in different parts of the body and prevent tissues and organs from working as they should. If left untreated, these granulomas can lead…
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Obstacles Don’t Define Us
I was diagnosed with sarcoidosis not long after my mother passed away in 2003, and it was totally by accident. I was having a conversation with a pulmonologist about participating in a sleep study. During the meeting, he talked about breathing issues and other conditions related to sleep apnea,…
Patterns of multiorgan involvement in African Americans with sarcoidosis differ from those of Americans of European ancestry, a study suggests. But in both groups, certain genetic mutations are associated with specific patterns of organ involvement. Collectively, its findings “support ancestry-specific differences likely resulting from distinct social, cultural, and environmental…