Most rare autoimmune disease
Don’t even bother trying to pronounce what I have, because I can barely get it right and I’ve had it for 11 years. It’s called Wegener’s Granulomatosis, a rare autoimmune vascular disease that primarily eats up your sinuses, lungs and kidneys. It can also chew through your joints, ears, eyes, skin and internal organs as it pleases. It’s in the same autoimmune family as lupus or rheumatoid arthritis, except invitees at this family reunion might seem kind of bummed when you and your unpronounceable German disease show up at the door. When I was first diagnosed, I said, “Weg-huh-nuh-what? That sounds like a Nazi disease or something!” Turns out, Friedrich Wegener was a Nazi doctor who named my form of vasculitis back in the 1930s. He wasn’t even a Nazi by force. He was a Nazi for fun. Wanted for war crimes and everything. No wonder there’s a movement afoot to change the name to something zippy like “ANCA-associated granulomatous vasculitis.” But let’s just go with WG for now.
Autoimmune disease is like a mean girl living inside you, telling you you’re lame and worthless and destroying your tissues while she’s at it.
Back in 1999, when I was a TV producer and comedy performer burning the candle into a pool of unrecognizable wax, I contracted a sinus infection that wouldn’t go away. Eventually, I was in so much pain that we did a scan, found a tumor in my sinuses, and had it biopsied. I was sent to a rheumatologist who diagnosed Wegener’s, and ordered me not to go on the internet and look it up. Naturally, I ran home and looked it up on the internet. I can still hear the “screeeee-ch, screeeee-ch” of the dial-up modem. This was 1999, people.
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Participating provincial and territorial health ministers discussed the significant challenges they face in providing new drug therapies to treat rare diseases.