Note: This story was updated Jan. 25 to clarify that the $1.5 million dollar matching grant in honor of Bob Saget was provided by Scleroderma Research Foundation board members Luke Evnin and Deann Wright, not the foundation itself. The late comedian Bob Saget sparks many memories for…
When I was diagnosed with scleroderma at 19, it was dumped into my lap. The doctor simply looked at me and said, “Get your affairs in order and work as long as you can. Scleroderma has no cure and will ultimately take your life.” To say I was affected mentally…
I remember it like it was yesterday. The classroom was quiet. My stomach suddenly decided it was angry with me for skipping lunch. The grumbling gastrointestinal noises were like thunder to my easily embarrassed self-esteem. Acting nonchalant, I looked around to see if anyone had noticed, hoping it was only…
We all face a lot of pressure to appear perfect — educated, attractive, healthy, capable, and independent. This can be a big pair of shoes for a “normal,” healthy person to fill. Now imagine how difficult it is for someone with a chronic, debilitating illness to check all of those…
Because no one else in my family had scleroderma, I’ve often wondered where I procured this delightful autoimmune disease. Scleroderma is the gift that keeps on giving, something I wouldn’t wish on anyone. I wonder if there’s a way I can return it, maybe for an in-store credit or a…
The scleroderma fog has struck again! My entire brain is floating inside a haze, and nothing is clear. I’ve been sitting in front of my computer for hours, writing and rewriting this column. I now have four different columns started, but as I write this, none are close to finished.
When the COVID-19 pandemic hit the U.S. in March 2020, it was like time stood still. Many chronic illness patients were on high alert, constantly afraid of contracting the virus. Given the complexity of my disease, scleroderma, even the common cold can land me in the hospital, fighting for…
As young adults, my friends and I used to play a drinking game called Never Have I Ever. The rules were simple: Someone calls out something they’ve never done. If you haven’t done it, either, you do not take a sip of your beverage. However, if you have participated in…
I pleaded with my doctor. “I want to chop off my finger! Please help me!” With pity in his eyes, he said, “It’s an ulcer. It’s common for people suffering from Raynaud’s syndrome.” Looking down at my throbbing pointer finger, I asked why it was…
My traveling days have been few and far between since I was diagnosed with systemic scleroderma in 2001. Now, it’s even more difficult due to the COVID-19 pandemic. However, I was invited to participate in an ad that will promote clinical trials, so last month, I traveled from my home…
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