Columns

Writing about scleroderma is important. It helps to raise awareness, and with any luck, funding for research to help find a cure will follow. I believe that one of the most important sources of information comes from the patients themselves. There is nothing more real than reading…

Healthcare coverage is a regularly featured story in the 24-hour news cycle. People’s opinions vary widely on the issue, as do politicians’ thoughts on the matter. Debates rage, tensions grow, and deeper divides are formed as our government wrestles with this colossal controversy. Nestled at the heart…

A new year can bring a hopeful new mindset. A New Year’s resolution is like a magical cure for the illness known as “old habits.” We convince ourselves to believe that a new year will help us get back on track, even though we had the option all year to…

“Ahh, great, another day to spend in bed.” I’ll bet no chronically ill patient has ever said this. Living with the currently incurable rare diseases scleroderma and Raynaud’s has certainly meant that I have had to spend more time in my bed over the last 19 years…

  Being a systemic scleroderma patient and travelling away for a vacation is a huge challenge, mentally, physically and emotionally. Enjoying yourself is even more of a trial, as I recently discovered on a weekend breakaway to Aukland, New Zealand with my husband Max…

The beginning of any journey in life is the most crucial place to set the direction the path will take. Childhood is an important stage to teach manners, responsibility and respect. Even the beginning of a song can make someone change it or leave it. Diseases work the same way,…

I am currently preparing for knee replacement surgery, take two (my left knee was replaced eight months ago). The entire preparation has reached fever pitch for me recently, with a flurry of appointments set in motion to give me a clear picture about how things will…

One of my biggest challenges of living with the chronic, incurable, and rare disease scleroderma and Raynaud’s, is that I am no longer physically able to maintain my professional career as a practicing barrister. The last time that I wore my court robes, wig and gown, was June…

A family wedding this past weekend became a catalyst that prompted me to think quite carefully about the changes that seem to have occurred in my personality since being diagnosed with systemic scleroderma. During the wedding service, I noticed how I was waiting…

I am preparing for my second knee replacement surgery as a scleroderma patient. It is a miracle I am even contemplating it after my experience with the first. However, if I want to be able to walk properly again, it is simply a necessity.