Scleroderma News Columns

June 18, 2021June 18, 2021

Let’s Get Ready to Rumble in the Fight Against Scleroderma

Scleroderma News Columns

The bell echoes loudly, signaling the fight’s start. The energy and stakes are high. Gloves on, two boxers face off with intense determination. Only one will be crowned champion. Living ... Read more

June 16, 2021June 16, 2021

The Other 20%: Scleroderma in Males

Scleroderma News Columns

They’re the elusive red diamonds in a sea of white. Rare upon rare, males with scleroderma make up 20% of scleroderma individuals. Their disease can also manifest uniquely among the ... Read more

June 11, 2021June 11, 2021

Scleroderma Is Complicated to Explain and Challenging to Live With

Scleroderma News Columns

“Look, Mom!” My teenage daughter bounds excitedly into the room to show me her phone. The screen displays a message adorned with fancy scrollwork designs. She reads the words “June ... Read more

June 7, 2021June 7, 2021

‘Excuse Me, What Did You Say?’

Scleroderma News Columns

The clock ticked loudly as the phones rang in unison with a ticking timepiece that was getting on my nerves. I wondered how long my appointment would take. Sitting in ... Read more

May 26, 2021May 26, 2021

Two Wonder Women With Scleroderma Share What Motivates, Challenges Them

Scleroderma News Columns

If I were a vegetable, I’d belong in a 5-pound sack of couch potatoes. When I began my career in China in the 1980s, there were no movies, magazines, TV, ... Read more

May 24, 2021May 24, 2021

On the Chronic Illness Battlefield, My Enemies Are Not Just Physical

Scleroderma News Columns

My fellow chronic illness warriors: You’ve never met me, but we’ve sat alone in the darkness apart yet together. Those of us who suffer from conditions like scleroderma have a ... Read more

May 14, 2021May 14, 2021

Don’t Cry for Me, Scleroderma

Scleroderma News Columns

It was one of those “oops!” moments — the express elevator down to your gut when you realize you hit “Reply All” by mistake. My inbox dinged — a lame ... Read more

May 10, 2021May 10, 2021

A Tale of Woe From a Human Pin Cushion

Scleroderma News Columns

“Don’t worry. This will feel like a pinch.” Sitting in the sterile room with a tourniquet wrapped tightly around my arm, I stared intently at the legion of vials awaiting ... Read more

May 7, 2021May 8, 2021

The Mother Lode: Highlighting the Special Moms of Scleroderma Patients

Scleroderma News Columns

Along the street lined with neatly planned townhouses, an effervescent spirit zigzagged through the households at midday. Every person under the age of 8, including me, felt hackles rise up ... Read more

April 30, 2021April 30, 2021

Relying on Gravity: Welcome to ‘Skintight,’ a New Column

COVID-19 Columns, Scleroderma News Columns

(Sung to “Defying Gravity,” with apologies to Stephen Schwartz.) Something has changed within me Some parts are getting tight I’m through with tiny buttons Give me sweatpants day or night. ... Read more

April 7, 2021April 7, 2021

During Flare-ups, My Scleroderma Body Pauses Life

Scleroderma News Columns

Messy is the best word I can use to describe a flare-up caused by scleroderma. My home, my thoughts, my life — they all unravel, and it’s messy. When my ... Read more

March 17, 2021March 17, 2021

Sleeping on an Inclined Bed Leads to an Enormous Wedgie

Scleroderma News Columns

The room is dark. My feet are tingling with pins and needles as they dangle off the foot of the bed. For a moment, I convince myself that I can ... Read more

February 24, 2021February 24, 2021

This Rare Disease Day, I’m Asking Others to Help Us Be Less Rare

Scleroderma News Columns

“You’re imperfect, and you’re wired for struggle, but you are worthy of love and belonging.” Brené Brown said these words, but they belong to my heart. The last day of ... Read more

February 3, 2021February 3, 2021

How to Endure the Torture of Esophageal Testing

Scleroderma News Columns

When something gets stuck in your throat, you’ll do everything imaginable to dislodge it. That’s why when someone intentionally threads a tube through your nose and down your esophagus, you ... Read more

January 20, 2021January 20, 2021

When My Disease Attacks, I Press the Reset Button and Move Forward

Scleroderma News Columns

There’s an ugly truth about chronic illness. It hides from the rest of the world behind closed doors. Only caregivers and those suffering truly understand.  It’s the suffering that happens ... Read more