It’s international Rare Disease Day, for the 300 million people worldwide (1) who live with a rare disease – including me. This is a summary of my introduction to the rare disease world, as an adult. This in itself is rare, as most rare conditions Read More …
Absolutely mesmerizing! That’s my summary of the 3D holographic show that my husband and I saw last night, here in Montréal, which brought a well-known era of art history to life. A giant screen took centre stage at the front of the room, while smaller Read More …
Almost as soon as I was diagnosed with a rare disease known for causing significant – or ‘high impact’ – chronic pain in 2016, I began using my nature photography as a means to raise awareness of pain. I’d already been using my photos for Read More …
If you’ve been following along on this journey – of a bioethicist become rare disease patient and chronic pain advocate – then you’re probably already aware that I started learning to paint two years ago. Almost two years to the day, but not quite. I Read More …
