My scleroderma diagnosis journey: What a long, strange trip it’s been
A columnist finds out about scleroderma from the 'National Enquirer'
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!
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.
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