‘We need research’: Advocates raise awareness on Rare Disease Day in Canada

Friday marks Rare Disease Day in Canada; however, the day is normally celebrated on the rarest day of the year – Feb. 29, when there is one.

“It’s estimated that one in 12 Canadians live with a rare disease. And that’s a lot,” said Dr. Somto Ibezi, a rare disease advocate.

In Canada, a rare disease is defined as one that affects one in 2,000 people or fewer.

According to the Canadian Organization of Rare Diseases, diagnosis can take a long time – if a person gets a diagnosis at all.

“Typically, we say five to seven years to get to a diagnosis, if you get a diagnosis,” said Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders.

Ibezi, who is a caregiver to her daughter with a rare disease, says many with rare diseases have trouble being taken seriously by medical professionals.

“There’s a common theme that they are not believed. And that’s a big shame because you live with this day in, day out and people don’t believe you,” Ibezi said.

Both the Canadian Organization for Rare Disease and Ibezi say rare diseases are often under-researched and underfunded.

“We need research. We need more drugs. We need more treatment options,” Ibezi said.

Wong-Rieger added that Canada is “significantly behind many other countries in terms of diagnosing and recognizing and being able to appropriately treat rare disease patients.”

Ibezi says her experience with her daughter has made her a better physician and taught her more empathy.

“I fully understand that those few minutes does not describe the entire life. It’s just a tiny snapshot,” she said.

Ibezu adds that while doctors are often taught to think of common diagnoses first, that doesn’t make rare diseases impossible and so keeping up to date on research is key.

“We now know that there are things that we’re not taught in medical school, and that’s just the importance of continuing medical education, which is mandatory for all physicians to be up to date,” Ibezi said.

For Rare Disease Day, the Canadian Organization for Rare Diseases is raising awareness of two common symbols used for representation: zebra stripes, as doctors are taught when they hear hooves to think of horses, not zebras (what is common versus what is rare), and the rainbow.

“Persons living with rare diseases is what we tend to say come in many sizes, shapes and colours, but they all kind of come together to create one family,” Wong-Rieger said.

Ibezi says no one knows what will come next for her and her daughter but she hopes that things like Rare Disease Day will help reduce the stigma.

“We don’t know what the future brings, but we’re hoping that with campaigns like this there will be less about, ‘Oh, you’re different because you’re living with this condition,’” she said.

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