Canada lags woefully behind many countries in terms of knowledge, diagnoses and treatments for rare diseases. This must change.
First Person is a daily personal piece submitted by readers. Have a story to tell? See our guidelines at tgam.ca/essayguideI’ve dealt with a rare medical issue all my life – a large, inoperable cerebral Arteriovenous Malformation ; a tangled bundle of useless and fragile blood vessels in my brain that, in my younger days, tended to unexpectedly rupture.
One doctor told me to stop, implying that I was manifesting the symptoms I found online. One told me to move to America because health care is better there. One acknowledged the condition but wanted nothing to do with the medication I wished to try; another told me to go home and stop worrying. And, at a time when far too many people are struggling to find a family physician in this country, I walked away from mine.
And finally, a few key specialists began to listen, attitudes began to shift and things began to move forward.
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