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Why is finding your community important?

After a diagnosis that changes your life, you need people who understand the journey you are about to embark on and find strength and support from others. After getting my sarcoidosis diagnosis I felt alone, I have family, friends, and many clinicians around me but no one truly understands how sarcoidosis impacts my life. Anyone with a chronic condition can relate and sympathize, but there’s a special kind of loneliness you experience with sarcoidosis. Unless you are seeing a sarcoidosis specialist, you usually know more about this disease than the doctor you are seeing.

Attending the FSR Global Virtual Sarcoidosis Summit allows you to connect with others who have your disease and can relate. Furthermore, attending this one-of-a-kind event allows you to connect with clinicians who specialize in this disease – this will be my third year attending! Making connections with any disease is important, but with sarcoidosis it is vitally important. Coming together to talk about this disease allows each of us to make a connection with others and that connection strengthens your health (emotionally and mentally). The summit shows you that you aren’t alone and reinforces the idea that when we meet and discuss, a commonality appears, and our voices and our community together can make changes.

Yes, we are each a snowflake, but when snowflakes get together, they have an impact on their surroundings! Join us this November 3rd – 5th for FSR’s Global Virtual Sarcoidosis Summit – Find Your Community, Find Your Life!

Garrie Farrow is an FSR Patient Advisory Committee Member and member of the ACTeNow! Patient Advisory Committee. She has been managing pulmonary sarcoidosis for 15 years and sarcoidosis arthropathy and skin sarcoidosis for 5 years. Garrie’s professional experience includes 16 years as an Applications Trainer for a nonprofit HMO. Garrie trains staff on how to use the Electronic Health System, SharePoint, and other applications developed within the company. You can hear more about Garrie’s story in the Tallahassee Democrat.


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