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Calgary boy joins global movement to spread awareness about rare condition

Click to play video: 'Calgary boy joins global movement to raise awareness about lymphedema' Calgary boy joins global movement to raise awareness about lymphedema
WATCH: Eight-year-old Tristan Tocila was born with a rare condition called primary lymphedema. Despite therapy and surgery there is currently no cure. As Tracy Nagai reports, the young boy is now hoping to spread awareness ahead of World Lymphedema Day on March 6 – Mar 5, 2021

An eight-year-old Calgary boy has joined a global awareness campaign to bring attention to a rare condition that currently has no cure.

“They’re uncomfortable,” said Tristan Tocila, pointing to a bandage around his hand. “(The bandages) make it smaller, a little bit, and I take them off when I need to.”

Tristan was born with primary lymphedema, a disorder that causes swelling in the left side of his body and his right foot.

Over the years, Tristan has had several surgeries in both Canada and France to try and treat the condition.

His mother said there has been some improvement, however, he still needs to wear compression garments to keep the swelling down.

“We need to continue with a lot of additional treatments, like compression garments and special massage,” said Ala Tocila, Tristan’s mother.

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Read more: Calgary mother looking for Lymphedema cure outside of Canada to help son

While therapy for lymphedema is funded by the province, Ala said she also spent several years trying to get her son’s operations overseas covered by the Alberta government.

After initially being denied, Tristan’s expenses were approved by the province following an appeal board’s decision in 2019.

“I would say that these days, doctors are more confident that this is supposed to be part of the treatment,” Ala said.

“He has no more issues with his breathing and the size of his swelling decreased significantly.”

While the province did not comment on Tristan’s specific case, officials said in a statement that the Out-of-Country Health Services Committee reviews funding applications on a case-by-case basis.

“Eligibility for funding requires the requested health service to be medically necessary, an insured service under the Alberta Health Care Insurance Plan, not available in Canada, and all other appropriate health services in Canada have been exhausted,” said Karin Campbell, the assistant director of Health Communications and Public Engagement.

Read more: New clinic promised for lymphedema patients

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According to the Alberta Lymphedema Association (ALA), surgery is still considered a relatively new treatment option in Canada.

“We do have a surgeon in Calgary that does lymphatic surgery, but it’s really new,” ALA spokesperson Diane Martin said.

“Right now, the gold standard for treatment for lymphedema is still complex, decongestive therapy and wrapping of your arm or leg or wherever you have lymphedema.”

Calgary-based surgeon Dr. James Kennedy said surgery to treat lymphedema patients began in Alberta around 2014.

“I am the only one [providing surgery] in the province and possibly in Western Canada,” Kennedy said in an email to Global News. “I do get steady referrals from B.C. and Saskatchewan, although we are not allowed to see patients out of province for elective procedures at the moment.”

Martin said despite there still being no cure, there have been advances in lymphedema awareness and treatment in Alberta.

Read more: Alberta families ask AHS to reconsider funding experimental treatments

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In December, a new clinic in Calgary began diagnosing patients.

“We’re really pleased they’ve realized we need to have a place for lymphedema patients to go because you could go for years without even knowing what you have,” Martin said.

“We’re going to work on trying to get another clinic opened in Edmonton and other larger cities in Alberta.”

Tristan is also doing his part to bring attention to his condition.

Ahead of World Lymphedema Day, observed on March 6, Tristan was featured in a video alongside actress Kathy Bates.

“The goal is not to be a hero,” Ala said. “It’s very important that we work together to spread awareness so people are being supported.”

The Calgary Tower is expected to turn teal on Saturday to mark the advocate-driven day of celebration.

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