I’m in the middle of training for the TCS New York City Marathon, the largest marathon in the world. I also have pulmonary sarcoidosis. I have written many times about my love of running, which I discovered at the start of the COVID-19 pandemic. My favorite gyms…
Kerry Wong
The other day I was surprised by a knock on my door, and even more surprised to hear the response when I asked who it was. It sounded like he said Jamaal Bowman — my congressman. It even sounded like his voice, which I recognized from countless interviews,…
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…
Kerry Wong
Before I was diagnosed with sarcoidosis, I’d never heard of this disease. No one I knew had heard of it, either, except, as my mom insists, in the differential diagnosis on the TV procedural “House, M.D.” Even then, it was never the answer. No one actually had sarcoidosis.
Kerry Wong
There seems to be a correlation between productivity and inherent value nowadays. The busier a person is at work, the more she is viewed as a great employee; the more a person accomplishes in life, the more she is praised and admired. While most of us understand the difference between…
Kerry Wong
It feels like something is missing for me this month. For the past two years, really. Before 2020, my Aprils were full of events, get-togethers, support, and connection with my sarcoidosis family. Now, we’re all in our own homes, saying again how much we miss each other as we get…
Kerry Wong
As I type this, I have 13 tabs open in my browser. I’ve been working on advocacy campaigns for the Arthritis Foundation and the RareAction Network, preparing for Rare Disease Week meetings with my members of Congress, reading other perspectives on Rare Disease Day, checking three different email addresses,…
Kerry Wong
Thanksgiving has always been one of my favorite holidays. It’s not about material things, or one religion over another, or one-upping anyone with decorations or extravagant gifts. It’s simply a day of gratitude. A day for friends, family, football, and of course,…
Kerry Wong
The sarcoidosis community took a serious hit when we learned of fellow warrior Rodney Reese’s passing on Sept. 25. A beloved husband, father, and grandfather, Rodney was also a friend, brother, and father figure to thousands of people living with sarcoidosis. We have lost a cherished member of our family.
For those with sarcoidosis, one of the most challenging aspects of the disease is finding folks who are just like us. I’m not referring to race, gender, or any other characteristic that differentiates us as individuals. I’m talking about the things that make us the same. I’m talking about finding…
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