Canadian Migraine Society founder Maya Carvalho spent years trying to get help for her migraine attacks. Her organization aims to offer support, dispel misconceptions about the disease and advocate for better treatments.Jennifer Roberts/The Globe and Mail
The organizer: Maya Carvalho
The pitch: Launching the Canadian Migraine Society
About 20 years ago, Maya Carvalho was working in marketing in New York when she began having migraine attacks that were so severe she could barely function.
“It really brought me to my knees, to be honest, the pain was so excruciating, and the disability from the disease was so intense that it was really a life changing experience for me,” she recalled.
Ms. Carvalho, 54, quit her job and returned to Toronto. She spent years trying to get help. “I went to all kinds of different neurologists. I tried probably 20 to 30 medications, and I just wasn’t getting better. And I was getting such negative feedback from physicians,” she said. She added that she “was basically having a lot of physicians tell me that there was no hope for me, and I was never going to get better.”
Her frustrations led her to launch the Canadian Migraine Society in 2020. “I’m in pain pretty much 24-7 and I didn’t want to waste it. I wanted to use it to build something meaningful that was going to support people, and something that I could use to push for change,” she said.
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The non-profit society has grown to around 5,000 members and its objectives are to offer support, dispel misconceptions about the disease and advocate for better treatments.
Ms. Carvalho said migraine attacks are more than an intense headache, which is a common misconception. It’s a genetic neurological disease that affects the entire body. Women are also three times more likely to have the disease than men, and they make up the vast majority of people who have 15 or more attacks a month.
Research into migraine disease has improved in recent years and there are several new medications, although some drugs cost as much as $9,000 a year. Ms. Carvalho hopes the society will empower people to seek more information from their doctors about what works best. She also wants to reduce the isolation people with the disease often feel.
Ms. Carvalho still has more than 15 attacks a month but improved medications have helped ease the intensity. “I’m really sort of running on adrenaline, because I just think we have to improve this for patients.”