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This Friday will be the last day of February, a sign here in Montréal that our long cold winter is coming to end. The final day of this month also marks international Rare Disease Day.
Did you know that I paint because of a rare disease?
My art practice evolved directly from two specific consequences of my first rare disease, and I've since been diagnosed with a second one; I now live with two quite different rare diseases.
In 2016, I had a healthcare career that I adored and was doing amateur nature photography & outdoor sports for fun, along with weight training for what I called my "zen relaxation".

Then in March 2016 I slipped on a patch of ice and broke my arm, and that simple fracture triggered a rare disease called Reflex Sympathetic Dystrophy, now renamed Complex Regional Pain Syndrome or CRPS.
Unable to do many of my previous for-fun activities, I soon volunteered all my spare time for chronic pain awareness and advocacy activities. I also became a Patient Partner (co-author) in pain research studies  and in projects to improve how healthcare professionals learn about pain.
Then, at the end of 2018, I had to abandon my beloved career after CRPS had resulted in a disturbing disability; a Mild Cognitive Impairment, on top of the severe chronic pain and many other symptoms of this bizarre autoimmune and neuro-inflammatory condition.
As part of my pain advocacy activities, at the end of 2020 I was reading research on the benefits of art practice for pain management - and potentially as brain-plasticity or neuroplasticity training to prevent cognitive decline.
This was the catalyst for my decision – during the pandemic – to nurture my lifelong dream of learning to paint with watercolours.
My Art Despite Pain (#ArtDesitePain) initiative soon evolved, completely intertwined with my own chronic pain snd my pain advocacy, while I continued my previous volunteer activities.

I often say that "I  paint because of pain", and that chronic pain - along with a Mild Cognitive Impairment and many other symptoms - all stem from that one rare disease named CRPS.
My second rare disease is Fibromuscular Dysplasia (FMD), which has nothing to do with muscles despite having 'muscular' in its name. FMD affects my arteries, causing some of them to look quite pretty in CT scans - like strings of pearls. Unfortunately having "bilateral beaded carotids" - as in my case - isn't a good thing. This rare condition can put me at heightened risk of aneurysm, spontaneous coronary artery dissection (SCAD), or stroke.
Luckily many of the 'pain-management tools' - lifestyle choices - that I use to make living with CRPS bearable are also good for the FMD; including aerobic or cardiovascular exercise (cycling, in particular!), eating mostly anti-inflammatory and plant-based foods, mindful meditation and other stress-reduction techniques (which encompasses my art practice), socializing with loved ones, and spending time in nature.
Because although it doesn't cause any obvious symptoms, my second rare disease is actually much more dangerous than the first. But it's the CRPS rather than the FMD that affects my life on a daily basis, causing severe pain, cognitive issues, unpredictable autoimmune fatigue, and problems in my right hand and arm; bone and joint issues, colour changes (of the nails and skin), skin sensitivity called allodynia, spasms, temperature changes, tremors, and more.
"Rare diseases and undiagnosed diseases may seem to affect few people, but in reality, there are more than 7000 distinct rare diseases, and at least half of them affect children.
To give an order of magnitude, the number of people affected by a rare disease in Canada is estimated to be as many as the number of people with diabetes."
So, on Friday, spare a thought for all of us living with rare diseases.