Columns

Have you ever been laid up by an acute episode of pain that is so debilitating all you can do is just lie there, hardly daring to breath for fear of making your agony worse? Living with systemic scleroderma means that unfortunately, acute episodes of…

As March is Autoimmune Disease Awareness Month, today I am going to focus on the autoimmune diseases and discuss the similarities in clinical unmet needs between some of the diagnoses. While it is widely known that an autoimmune disease is one in which the immune response starts to attack healthy tissues,…

I had a friend over for a cuppa and a chat this week, and we found ourselves having a good laugh about events and experiences from our lives. To be honest, it was a lot more than a good laugh. The hilarity reached the stage where we…

Buying a new pair of shoes used to be one of my favorite things to do. The unsightly red spots, telangiectasia, which are generously sprinkled all over my body, limit the clothing I choose to wear. Anything backless, strapless, sleeveless, scoop-necked, or low-cut is immediately ruled out. Being…

Less than a week remains until Rare Disease Day (Feb. 28), the theme for which this year is research. In this column I discuss some of the many current unmet research needs of systemic scleroderma and Raynaud’s patients. Clearly, a cure, combined with understanding of the disease cause,…

My scleroderma keeps me inactive; the pain and fatigue are continuous. There are times when I feel my recliner has trapped me — that it has become a kind of prison because I am forced to rest in it all day. I imagine that many people suffering…

Lately, life has been a bit of a conveyor belt loaded with one health challenge after another due to my systemic scleroderma. Just when it seems to slow to a halt, something cranks up the darn thing again. At times like this it is difficult to find…

https://sclerodermanews.com/wp-content/uploads/videos/nicola_blog.mp4 The theme for this year’s Rare Disease Day on Feb. 28 is “Research,” which is a most-welcome topic to Raynaud’s and scleroderma patients across the globe. Investment in medical research provides immense hope and some comfort to the rare disease patient living with a currently…

Because I’ve been feeling gloomy since adding the diagnosis of secondary adrenal failure to my existing diagnosis of systemic scleroderma, I decided to try a little task that I used to offer my clients when I was a counselor. It’s a bit cliche, but in my experience,…

When you’ve been a “frequent flyer patient” for as long as I have, you learn how to navigate the perplexing world that is our healthcare system. For 32 years, I’ve been a prolific health care consumer (not by choice) and have seen the good, the bad and the…