Float Like a Buttahfly
— Kerry Wong

A graphic depicting a butterfly winding through the sky.

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.”

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Using our role as ‘professional patients’ to learn and pay it forward

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…

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How do you celebrate Autoimmune Awareness Month?

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…

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The best advice I ever got for dealing with a rare disease

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…

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Patients and healthcare providers should approach AI with caution

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…

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The questions of menopause mirror the uncertainty of sarcoidosis

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…

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A holiday gift guide for your loved one with sarcoidosis

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…

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When patients and caregivers swap roles, empathy usually follows

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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Drama series reflects the best, worst of online patient communities

“This is a true story based on a lie.” That’s how each episode of “Apple Cider Vinegar,” a Netflix series released earlier this year, begins. The show tells the story of Belle Gibson, an Australian wellness influencer, app developer, and cookbook author. Through sharing her story about her…

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With chronic illnesses like sarcoidosis, community is key

Sitting at the infusion center for my intravenous immunoglobulin (IVIG) treatment, I opened up a Google Docs tab on my laptop. I’d just gotten an idea for a column, and wanted to jot down some notes before I forgot it. I had typed exactly eight words when another patient stopped…


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