As a scleroderma patient, I have a trusted team of medical experts who work with me to help keep me as well as possible, and prescription exercise is part of their treatment plan. This week, however, I’ve had to admit that I appear to…
According to the Census Bureau, about 30 million people in the United States walk with a cane, crutch, or wheelchair. What do you do when you see someone with a visible problem? Your eyes are immediately drawn to the source, to whatever’s disturbing the “normal” flow of…
The month of June is Scleroderma Awareness Month, with June 29 being World Scleroderma Day. To further the theme of Rare Disease Day 2017 — “Research, where possibilities are limitless” — the focus of my Scleroderma Awareness Month campaign is “Research,” while also focusing on patient profiles from various countries, highlighting…
The enormity of systemic scleroderma often feels way too big for me to fight. At times, I feel like a very small person, weakened by disease, who is just trying to get through each day. I often wistfully wonder if there will ever be enough understanding to find…
To further the theme of Rare Disease Day 2017 being “Research, where possibilities are limitless,” I made the focus of my Scleroderma Awareness month campaign, “Research,” while also focusing on unmet patient clinical needs. By giving the campaign a global approach I hope that an improved…
While I have been recovering from my knee replacement surgery, I have been giving much thought to how I view things as a scleroderma patient. I have been pondering an age-old concept, considering whether the glass is half empty or half full. Lately, it…
What does the phrase “fighting for my life” mean? Often when someone is going through a struggle, one will hear them say, “I’m fighting for a chance to survive.” Does this mean all the sick people of the world are taking medication by day and karate classes by…
Scleroderma Awareness Month runs through the month of June, with June 29 designated as World Scleroderma Day. On June 1, I launched my Scleroderma Awareness Month 2017 “Patient Profiles” campaign. In this column, I hope to provide a résumé of the information shared so far, along with…
It’s two days before I have surgery as a scleroderma patient, and because I have endured one total knee replacement already, I unfortunately know what I am in for. However, in the lead-up to the big day, I have had a visit from an…
Dear Caregivers, You are the glue that holds my life together, intricately filling in the cracks of emptiness. Your role in my life requires an alert sense of awareness, and I see myself in the reflection of your eyes, as you make my comfort your priority. This…
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