Changing Tactics for National Sarcoidosis Awareness Month
National Sarcoidosis Awareness Month begins on April 1 without the fanfare of years past.
We can’t participate in walks. We can’t gather for events and fundraisers. And news cycles are focused on the global pandemic of a virus that attacks the lungs, not a rare disease that infiltrates the lungs of more than 90 percent of those diagnosed with it.
But we are here. We are fighting. This year, more than ever, it’s important to raise awareness about sarcoidosis.
The invisible battle
We are easy to miss. Our numbers aren’t large. According to the Foundation for Sarcoidosis Research (FSR), an estimated 150,000-200,000 people in the United States have sarcoidosis. I’m among those for whom it is an invisible disability, with no outward signs of its presence. The cluster of inflammatory cells known as granulomas caused by sarcoidosis are most often found in the lungs and lymph nodes, but they can occur just about anywhere, including in the skin, kidney, heart, and eyes.
You’re unlikely to meet someone with sarcoidosis in your daily life, if ever, as has been my experience. Battling a rare disease people don’t often share or understand can be lonely and difficult. Connecting with others helps, and a variety of options are available.
Plenty of national and international sarcoidosis patient societies exist, and you can find them listed at the World Association for Sarcoidosis and Other Granulomatous Disorders website. FSR rolled out a “Stop Sarcoidosis” support group on Inspire for patients and caregivers to connect. The group now has a mobile app. Here at Sarcoidosis News, you can get information, news, and firsthand perspectives of living with sarcoidosis from columnists Kate Spencer, Charlton Harris, and me.
Help bring awareness to sarcoidosis
With the absence of events and news to get the word out this year, it’s up to us to rise up. Flood social media. Purple up the month with awareness. If you are out of the house, wear a sarcoidosis T-shirt. If you are indoors, decorate your windows.
On World Sarcoidosis Day on April 13, FSR is encouraging everyone to post selfies in purple shirts to social media with the hashtags #WorldSarcDay and #StopSarcoidosis. You can download a printable World Sarc Day sign to hold in your photo at the FSR website.
We are warriors
As I’ve previously noted, managing sarcoidosis can require extraordinary strength. This is a trait we can draw upon now to get through the current crisis. We are warriors. We are resourceful. We are used to fighting. And we go into battle, often while immunosuppressed, and conquer the days.
This month, let’s make people aware. We are here. We are fighting. And with the current COVID-19 pandemic, that fight has become much harder for some of us. Everyone can help by being mindful and doing everything possible to help stop the spread of the coronavirus. Whether you are healthy or battling an illness or disease, we are all in this together.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.