“Sarc-a-what?” That’s usually the response we get when we tell someone we have sarcoidosis. “What’s that?” they ask, and then tune out the long explanation we begin to give. “Oh, good,” they add, “at least it’s not cancer.” And that’s precisely why we need Sarcoidosis Awareness Month. Throughout…
Float Like a Buttahfly – a Column by Kerry Wong
As I stared into my closet this morning, a bright green shirt called out to me. It is St. Patrick’s week, after all, and I knew it would make the two Irish nursing assistants at the infusion center smile. When I pulled it out of the closet, the design seemed…
When I was diagnosed with “some kind of arthritis, probably autoimmune” in 2011, I wanted to learn all I could. After years of being dismissed and disregarded by doctors because I “looked fine,” even this nondiagnosis was a big step for me. It was validation, after all those years,…
When I was in grad school, I was a teacher’s assistant for an English literature class about 14th century author and poet Geoffrey Chaucer. During my first opportunity to teach the class, we focused on his poem “Parlement of Foules,” in which St. Valentine’s Day is designated as…
When it rains, it pours … but when it snows, it’s sarcoidosis. Sarcoidosis is often referred to as a snowflake disease because no two cases are exactly alike. Symptoms can begin at any age and affect any area of the body. It is often a chronic condition,…
I was recently scrolling through my Instagram feed when I saw a post from another sarcoidosis advocate that struck me. It was a simple video showing her with the text “1974” and a caption that read, “Starting today I’m 48 years old for only 48 more days. I’m entering…
“Hang on a sec, hon,” I called to my husband in the car, at the airport, and again on the plane. “I want to get a good shot. I’m sure something from this trip will work its way into my next column.” Boy, was I right — but not in…
How are you? It’s such a common question, I’ve even learned to say it in multiple languages: Cómo estás? (Spanish), Eich at/ata? (Hebrew), Come stai? (Italian), Comment allez-vous? (French), Nǐ hǎo ma? (Chinese), Ti kanis? (Greek) — and let us not forget, “How YOU doin’?” (Joey Tribbiani, “Friends”). Ironically, when people…
The other day I picked up my new glasses — a pair of bifocals, because my doctor said that progressive lenses would worsen my dizziness and vertigo. The same day, I was discharged from physical therapy because my insurance company didn’t see enough progress. Since every other treatment has…
“‘How does one become a butterfly?’ she asked pensively. “‘You must want to fly so much that you are willing to give up being a caterpillar.'” — Trina Paulus, “Hope for the Flowers” Winners never quit, and quitters never win. When the going gets tough, … you know…
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- The questions of menopause mirror the uncertainty of sarcoidosis
- 7 new institutions join FSR alliance to improve treatment of sarcoidosis
- Simple blood test may predict cardiac sarcoidosis outcomes
- To scoot or not to scoot: Using a mobility aid with a dynamic disability
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- New report highlights unmet needs and treatment burdens in sarcoidosis
- Cardiac sarcoidosis symptoms at diagnosis help predict long-term risk