Dwarfism advocate leads charge for specialized clinic in Manitoba

Posted on October 25, 2024 by Peggy

Samantha Rayburn-Trubyk’s advocacy efforts led to Manitoba in 2017 becoming the first Canadian province to declare Oct. 25 Dwarfism Awareness Day.

Now, on the anniversary, she is seeking more than just awareness.

Rayburn-Trubyk is leading efforts to open a specialized clinic for skeletal dysplasia, a medical condition in which bones do not or cannot grow in the usual way. There are more than 400 types of skeletal dysplasia, including dwarfism.

And they all come with health challenges, such as spinal stenosis, sleep apnea and hydrocephalus, says Rayburn-Trubyk, president of Little People of Manitoba and the advocacy director for Little People of America.

“There’s lots and it really could be a life-or-death situation. Having a specialist here who could help and who just knows the ins and outs of everything would just be phenomenal,” she said, noting a Winnipeg-based clinic could service Manitoba, northwestern Ontario, Saskatchewan and the Northwest Territories.

“So there’s a huge community that could benefit from this.”

Right now, anyone who needs specialized care must travel to the United States, Toronto or Vancouver, Rayburn-Trubyk said during an interview with CBC Manitoba Information Radio host Marcy Markusa.

Last October, Little People of Manitoba funded two specialists to come to Winnipeg — from Johns Hopkins University in Baltimore, Md., and the University of British Columbia.

“They came and met with local doctors here. We wanted to provide [Manitoba doctors] with that connection … so they could have someone to reach out to if they had a person with skeletal dysplasia come through,” Rayburn-Trubyk said.

When it comes to opening a clinic in Manitoba, Rayburn-Trubyk says there are two local doctors willing to help get the ball rolling, as well as a philanthropist who has offered to help fundraise on a large scale, she said.

However, there is a missing stakeholder.

“We need — and what we’ve been asking for — is a meeting with the province,” Rayburn-Trubyk said.

“We’ve had it scheduled a few times and rescheduled, and [there is] nothing in the books now going forward. I’d really like to have a conversation with the health minister and the premier.”