CALIFORNIA — There are things in life that we take for granted like riding a bike or exercising. For those living with genetic diseases though, day-to-day activities can be a challenge.
"When I was working in a retail store, I [was] falling all the time," said Courtney Frazier.
Frazier has spinal muscular atrophy or SMA. It’s a genetic disorder caused by a loss specialized nerve cells needed for muscle control. She used to need spinal taps every four months that left her with debilitating headaches but now a new treatment has given her her life back.
"The other day I made it almost all the way back to where the winery is, which is quite a bit further than the tree I normally stop at, so it’s been pretty cool," said Frazier.
She loves to ride her bike down country roads but SMA limited her endurance. She takes the liquid treatment Evrysdi every day now and has seen major improvements. She no longer has to take time off work or spend weekends feeling sick.
“It was such a relief because there were so many things I don’t really have to think about," said Frazier.
Frazier has a YouTube channel where she talks about her experience. She said she felt alone when she was first diagnosed but wants to remind others that that’s not the case.
“I found [there] are really a lot of supports out there so don’t be afraid to reach out to a support system," said Frazier.
In her videos, Frazier shares ways to exercise while living with the disorder and encourages others to find a treatment that works for them.
“If it’s not working for them, maybe look for other options, see what’s out there," she said.
Frazier is an independent living instructor and sells handmade crafts like headbands and t-shirts. She’s not letting SMA get in her way and she’s inspiring others to do the same.
“Have hope. There could be something coming and just don’t give up," she said.
You can visit Frazier's YouTube channel here.
