When I was diagnosed with sarcoidosis, I immersed myself in the community and made April — which is Sarcoidosis Awareness Month — my busiest time of the year. I dressed, accessorized, and dyed my hair purple, the official color of sarcoidosis awareness. I created walkathons and other awareness events,…
Float Like a Buttahfly – a Column by Kerry Wong
I recently opened a fortune cookie to reveal a message saying, “Your education will empower you to make informed decisions in your professional life.” That may have been true in my career, but it feels even more so now in my life as a professional patient. I don’t remember the…
When I learned that New Edition, Boyz II Men, and Toni Braxton were touring together, I knew my husband and I had to go. We grew up on their music, and songs from 20, 30, even 40 years ago still make my heart sing (they make me sing, too, but…
How do you celebrate an awareness day, week, or month? I know how we celebrate other special days on the calendar. New Year’s Eve? Watch the ball drop and kiss at midnight. Passover? Dinner with the family, and no bread for a week. Birthdays? Celebrate with loved ones, perhaps dinner…
Over the weekend, I went to see the Harlem Globetrotters on their 100 Year Tour. I’d seen them as a child, but since I only started watching basketball a couple of years ago, I’ve gained a new appreciation for their incredible skill. The shots they take, the stunts, the acrobatics…
Last week, I met with a new hepatologist to address concerns about my liver function tests. The week before, I had a follow-up with the neurologist who’s been treating my sarcoidosis-associated small fiber neuropathy for years. At both appointments, my doctors asked permission to use artificial intelligence (AI) to…
Menopause is something that affects just about half of the population eventually. But for many, it remains a giant question mark, or a whole bunch of questions. In that way, it resembles sarcoidosis. There are the basic questions about it: Am I currently going through it? What stage am…
When I received my Social Security Disability retro check after a two-year appeal, the first thing I purchased was a mobility scooter. I had rented one for a couple of advocacy trips and a vacation by then, and knew it would be best to have my own. Consequently, it seemed…
It’s beginning to look a lot like chaos! It never fails — no matter how much we plan, the end of the year always seems to sneak up on us, bringing a rush of madness. There’s too much to do, and never enough time to do it. While that’s surely…
Over the past two decades, I’ve gone from being an active, fit young woman to an overweight, disabled old lady dealing with a range of chronic illnesses. This transformation hasn’t been a straightforward journey; it has been filled with obstacles, detours, and dead ends. Some days, my sarcoidosis symptoms…
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- Kaleidoscope sparks new Sarcoidosis Awareness Month campaign
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- Atyr to discuss efzofitimod’s future with FDA after Phase 3 sarcoidosis trial