🦋 Kerry Wong,  Columnist—

Kerry Wong lives in Westchester, NY, with her husband, the boy next door she had a crush on since she was a child. She was diagnosed with sarcoidosis in 2015, after an 8-year search for answers. Though disabled, Kerry remains active as a writer and advocate for the rare disease and chronic illness communities. Her goal is to help others living with these conditions feel seen, validated, and empowered. She recently published Kaleidoscope: Rare Disease Stories, a diverse collection of true stories told by nearly 50 rare disease warriors, and plans to expand this into a series. Through her column, Kerry shares how chronic illness has led to transformation, and invites readers to float with her, “like a Buttahfly.”

Articles by Kerry Wong

Sarcoidosis Month Is for More Than Just Awareness

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…

You Say Remission, I Say Remission-ish

For the past few months, I’ve been having a lot of pain around my ribs. I may have dislocated a rib, causing everything in the area to tense up in response (I’ve done that before), or it could be costochondritis (inflammation in the connective tissue around the ribs), which is…

Finding the Antidote for Impostor Syndrome

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,…

Dancing the Sarcoidosis ‘Cha-Cha Slide’

“Optimist: Someone who figures that taking a step backward after taking a step forward is not a disaster, it’s a cha-cha.” — Robert Brault This is exactly what sarcoidosis is like. It’s like we’re living in the song “Cha-Cha Slide.” Having sarcoidosis is a never-ending dance of symptoms, doctors,…

Sarcoidosis Made My Close Call With COVID-19 Even Scarier

We’re all familiar with the evolutionary fight-or-flight response. When faced with stress or danger, we go through physiological changes that enable us to either battle a predator (fight) or escape the situation (flight). However, there is another option, although we probably wouldn’t choose it willingly: to freeze. That’s…

This Thanksgiving, I’m Grounded in Gratitude

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,…