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Naturally, I am in contact with many people who have scleroderma, because I also have systemic scleroderma. I connect with other patients either through social media networks online or in person. Some scleroderma patients are high-profile people, many of whom we know well because we see…

When I was a kid, my friends and I loved to look at one another and spout with cruelty, “I hate you!” Just when it looked as though someone might cry, we’d shout with delight, “I’m kidding! It’s Opposite Day! I like you!” We found the concept…

World Scleroderma Day, June 29, 2017 Wehoo, Thursday, June 29, is World Scleroderma Day. This is our opportunity to showcase the rare disease scleroderma to the world to raise awareness — whether it be for fundraising purposes, for investment in research for that oh-so-desired cause and…

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…