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Many people tell me they worry about how much pain I endure and wonder if having scleroderma hurts. I rarely address this because I don’t want others to worry about me. I also don’t want to bore anyone with a lengthy description of all my ailments. Have you ever…

Almost 18 years to the day from my visit to the Scleroderma Unit at The Royal Free Hospital in London, I was exhilarated to have been told on Nov. 30 by world-renowned scleroderma expert Prof. Chris Denton that my “skin is now cured from…

Several years ago when I was working as a therapist, I came across the work of Elaine Aron – The Highly Sensitive Person.  After reading her first book I quickly realized she was describing me! It was all a bit spooky; I began to wonder if she…

Have you ever seen a stranger in distress and wanted to help them, but weren’t sure if it was appropriate? When we see someone on crutches, we know we should make an effort to hold the door open for them, or let them go ahead of us in…

I had been thinking the camera on my phone is faulty.  It seems to have been mistakenly set to “red spotty chipmunk face” mode for the past year or so, and I just couldn’t seem to change the setting.  Every selfie I took produced the same result!  My…

In March, I wrote about the amazingly brave young man, Wyatt the Warrior. Wyatt was diagnosed with localized scleroderma two years ago, when he was 8. Wyatt, now 10, and his twin brother Weston, have had a busy six months attending medical appointments, as well as…

Five years ago, Christchurch, New Zealand, was woken with a huge earthquake rated 7.3 on the Richter scale, with the epicenter just three kilometers from our house. I recall sprinting up the hallway at about 3 a.m. to get to the kids while being thrown from side to…

I think the world would be a far better place if people could do two simple things: Ask for help when they’re in over their heads. Admit when they’re wrong and adjust their behavior accordingly. I’ve lived with scleroderma for more than 32 years and still struggle with swallowing my…

My rheumatologist refers to my fatigue as being “profound.” Most days I can’t think of a better word to describe it. Let me share a typical day with you. I’m sure chronically ill people who struggle with fatigue can identify  with some of these things. (First, a disclaimer: The following…

I think about skin a lot more than most white people. I know that’s a really weird statement, but it’s true. Because my skin looks so different, I am quite aware that my skin influences how people perceive me. Having been diagnosed with scleroderma at age 10, I’ve grown accustomed to people…