My scleroderma diagnosis journey: What a long, strange trip it’s been

A columnist finds out about scleroderma from the 'National Enquirer' by Tomisa Starr | November 6, 2024

I’m 61 years old and live in a city over 100 miles away from a scleroderma care center. I’ve been diagnosed with the disease several times over the past 30 years, and it took me an equal amount of time to get referred to the Stanford University Scleroderma Center in California. I’m hoping to start going there for care next month.
My scleroderma symptoms began in childhood when I was about 8 years old. I had shortness of breath and lightheadedness, and I couldn’t keep up with the other kids running around on the playground. These problems might’ve gone unnoticed, but thankfully, a teacher told my mother I looked like I was going to pass out on the playground.
My pediatrician diagnosed me with a mild case of rheumatic fever, and I had to get blood tests a couple times a month for about two years. No one I knew had ever heard of scleroderma, not even my pediatrician.

​I was 11 when I heard of scleroderma after reading about it in the “National Enquirer.” “Scleroderma — The Disease that Turns People to Stone!” the headline shouted. “Thank God I don’t have that,” I thought.

But I did, although I wouldn’t know it until decades later.

After a high school physical revealed no trace of rheumatic fever, my life was relatively uneventful. In my 20s, I fell in love, got married, and had a child. Then, I began to feel very ill. I felt so bad and exhausted that I had trouble taking care of my infant daughter. Several doctors dismissed my concerns. “All new mothers are tired,” one said.

When my daughter was 2, a dermatologist finally put it all together after ordering tests. “You have scleroderma,” she said.

Other tests showed heart, gastrointestinal, and lung involvement. I could feel my skin tightening and my tendons shortening. I was given penicillamine, apparently to prevent the disease’s progression in my internal organs. It didn’t do much, if anything, except improve my skin a little.

Over the years, my symptoms got worse and my scleroderma diagnosis went back and forth between the limited and diffuse types. (Limited scleroderma is milder and more common than diffuse scleroderma.)

My community doctors, who didn’t know about the disease that turns people to stone, attributed my worsening symptoms to other causes, such as my lifestyle. Because I was unable to access care at a scleroderma center, I couldn’t access clinical trials for other potential treatments. My care has been stuck in the previous century.

I’d like for you to get to know me through this column, which will describe my scleroderma journey so far. It’ll be like a journal of my care at an accredited scleroderma center, with the goal of bringing my scleroderma trip out of the darkness and into the light.

And what a long, strange trip it’s been!

About the Author
Tomisa Starr - Tomisa Starr is from California, the Golden State. In addition to having diffuse systemic sclerosis, she manages multiple chronic conditions: progressive fibroctic interstitial lung disease, pulmonary arterial hypertension, arrhythmias, and gastroesophageal reflux disease. Most of her conditions are invisible. Diagnosed with diffuse scleroderma in the 1990s, Tomisa hopes her column, “Scleroderma: Road Under Construction,” will show readers that it is possible to live a long time with the disease.