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…
The first day of June marks the start of Scleroderma Awareness Month, and June 29 is World Scleroderma Day. Further to the theme of this year’s Rare Disease Day 2017 being “With Research, Possibilities Are Limitless,” I have made research the theme of my Scleroderma Awareness…
Everyone on the face of this Earth has gone through something that temporarily halts their life, similar to a “pause” button on a CD player. It could be something aggravating such as breaking a limb, or something stressful such as moving to another state. In those moments,…
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