People with sarcoidosis in three of the hardest hit English-speaking cities during the initial stages of the COVID-19 pandemic — London, New Orleans, and New York — reported considerable disruptions in healthcare, a survey study has found. Patients also had concerns for their own survival and believed that they were…
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The last few weeks have been an excellent reminder of just how important and vital community can be, especially when you have a rare disease. Last weekend, the Foundation for Sarcoidosis Research (FSR) hosted its Global Virtual Patient Summit. FSR does a great job of bringing the sarcoidosis…
What have you done today that would make a difference in your life? What did you do yesterday? Are you just going through the motions of existing, or are you living the adventures of your life? These questions may sound a little suspicious, but they have to be asked. They’re…
Temple Lung Center at Temple Health in Philadelphia has become a founding member of the Foundation for Sarcoidosis Research (FSR) Global Sarcoidosis Clinic Alliance, a group of clinics and hospitals around the world that aims to improve the lives of sarcoidosis patients through care and research advancement. “Sarcoidosis is…
Your comfort zone keeps you comfortable. That’s where the lie begins. Earlier this year, I bought a new SUV. Well, not brand new, but newer than what I had before. It’s not like my other SUVs in that it doesn’t have a sunroof, but I can live with the minor…
“I’m broke, but I’m happy I’m poor, but I’m kind I’m short, but I’m healthy, yeah!” — Alanis Morissette Well, maybe not that last one. Inspired by recent columns by my colleagues relating “Stand By Me” to Friedreich’s ataxia and “West Side Story” to cystic…
Life interrupted! The other night I fell out of bed. I’d been dreaming I was having drinks with my brother, and while we were talking, someone stepped over the bar and started to walk on me. My immediate reaction was to kick this person, which I did. I kicked so…
I recently read that social media basically captures our best fake day. I found that comment extremely funny, then quite sad. If I were to clean up that comment, I’d say something like, “Social media sometimes captures our best fake day, if we let it.” Because for me, and most…
The Foundation for Sarcoidosis Research (FSR) has launched the FSR Global Sarcoidosis Clinic Alliance, a hub of clinics and hospitals around the world to advance care and research in sarcoidosis. Through engagement and education of both patients and clinicians, the initiative seeks to improve the lives of people with…
My birthday was three days ago, which was three days after the first day of summer. Growing up, the last day of school often fell on my birthday. My final report card determined if my day would be happy or crappy. As I got older, my birthday became a time…