Cynthia Cheng Mintz, 42, has lived with the condition since she was young. And while she says it doesn’t affect her daily life too much, she told CBC News doctors need to monitor her condition regularly as some of the tumours could become cancerous.
“I just have to do more scans and MRI’s and things like that than the average person,” she said.
“I had to start getting mammograms a lot earlier than other women. And in addition to mammograms, I also have to have the breast MRI, which is actually very uncomfortable.”
1 in 10,000 Canadians affected
Neurofibromatosis affects approximately one in 10,000 Canadians, according to a news release from UHN. While the tumours can cause embarrassment for some of those affected, the disorder also comes with the risk of disfigurement, blindness and hearing loss, in addition to cancer. The announcement of the donation on Tuesday was fitting as May 17 is World Neurofibromatosis Awareness Day.
The money will help the clinic hire a neurosurgeon who specializes in treating people with the disorder and will allow it to collaborate with other research centres, says Dr. Gelareh Zadeh, medical director of UHN’s Krembil Brain Institute.
“This is one of the single largest donations to NF research,” she said. “It’s really an incredible opportunity … to advance the field and to be able to have better management options for the patients.”
She rejects the stigma associated with talking about her disorder. Spreading awareness is a big step in securing the funding needed for more research, she says.
“The more funding we put into research, the quicker we’re going to find improvements and better treatment for these conditions.”
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