Rare Disease Day zebra (28.02.2018)
Today is International Rare Disease Day. I’ll be heading to the downtown (city centre) area after work, to attend an event organized by a group of medical students at McGill University.
These students founded & created the Rare Disease Interest Group (RareDIG) at the University just last autumn. This is the first event they’ve organized for International Rare Disease Day, and the line-up looks great.
Visit https://www.rarediseaseday.org/event/canada/2340 for details, on the 2018 Rare Disease Day website. There were still tickets available a few days ago – for only $10! – including wine & cocktail-type food.
There will be an even 50%-50% split of speakers; 2 rare disease patient advocates and 2 speakers on the research side of rare diseases. I was also very pleased when I found out that both visible and invisible rare diseases will be represented.
One of the rare disease presenters has a visible condition and uses a wheelchair, while the other’s disease is invisible. I’ve been dealing with an invisible & rare disease for almost 2 years now. So I’m very interested to hear whether the same kinds of challenges are faced by others with invisible & rare diseases – even if our conditions are very different.
The event’s being organized by medical students, mostly for medical students. But people with rare diseases are also being encouraged to attend – and to wear any colours or logos associated with their diseases. And to wear “zebra” colours, prints, or accessories.
Why zebra? Folks with rare diseases often refer to ourselves as zebras – in healthcare systems set up for horses! Medical teams are taught to look for the simplest explanation for a symptom or condition. But that approach can lead to misdiagnosis or missed diagnoses of rare diseases.
The colour of my rare disease is orange, so when I recently found a few orange tops on sale at one shop, I picked up 3 different ones! I already had a black & white animal print skirt, with some zebra stripes. So today I’ll be pairing my zebra skirt with a black top, and wearing a long orange sweater over them…