Huntington Beach woman creates online community to help young adults with cerebral palsy

A Huntington Beach woman is harnessing the power of social media to provide a network for young adults diagnosed with cerebral palsy to find support and friendship.

Katy Fetters will present her first “CP Social” on Saturday at Mama’s on 39 in Huntington Beach. About 50 locals and out-of-towners registered for the event, where people can share their experiences of living with cerebral palsy, a developmental disorder that affects movement and muscle tone. Registration is now closed.

The gathering has been years in the making. Fetters, 26, first began documenting her experience with the disorder in 2009 on her blog called TeenCP. She used the blog, now rebranded Cerebral Palsy Strong, as an outlet and gained a loyal following of teenagers who were happy to find someone they could relate to. Several of her longtime readers have become friends that she’ll finally get to meet in person Saturday.

On TeenCP, Fetters’ stream-of-consciousness entries revealed her worries about what she described as “trivial things” but important for teenagers. She talked about finding comfortable and supportive yet stylish shoes to wear to her high school prom. She wondered if boys would like her even though the left side of her body had been weakened by the disability, often resulting in her limping or wearing an ankle brace.

Symptoms of cerebral palsy — the most common motor disability diagnosed during childhood — vary from person to person, according to the federal Centers for Disease Control and Prevention. Some people may not be able to walk at all, while some may walk awkwardly.

Fetters couldn’t stand for more than two to three hours at a time. She wore an ankle brace on and off, received Botox treatment on her calf and tried a special cast that offered her left leg more support, but she struggled with how people would look at her.

Back then, she said, she hadn’t met anyone else with the disorder and felt lonely, despite having a close relationship with her family.

“I was able to downplay it, but growing up in Huntington Beach and Orange County, there’s some insecurities of being more self-aware, and I felt like I needed extra support nobody else could provide me except for therapy,” she said.

After Fetters graduated from Soka University in Aliso Viejo in 2015, she stepped back from her blog to pursue further college and go about her daily life. She said she always knew she would return to her online community but wanted to find a new purpose.

Her “aha moment,” she said, was learning about the ExoSym Leg Brace, a hybrid prosthetic-orthotic device designed by Hanger Clinic to help people with limb injuries.

She got the brace two months before she went on a five-month adventure through South America in 2017 before starting a graduate program in media and public engagement at the University of Colorado, Boulder.

The brace improved her quality of life, helping her walk better, Fetters said. But most importantly, she said, it changed her perspective on her disability, encouraging her to talk about cerebral palsy rather than shy away from it.

“Even in the cerebral palsy community there is a stigma against wearing something that sets you apart from somebody,” she said. “But there’s no more pain anymore. I just had to change my attitude of presenting myself with the disability. People ask, ‘Did you tear your ACL?’ Reactions are widely varied, but I’m much more comfortable.”

With help from the brace, Fetters completed a 28-mile hike — with some help from riding a donkey — through Colombia’s jungle and climbed more than 3,000 stone slab steps to reach the top of Machu Picchu in Peru.

Fetters said she hit mental roadblocks along the way but credits the brace for enabling her to take on outdoor adventures she might not have attempted otherwise. She said she discusses the device on her blog in case others might benefit from it.

“I’ve figured out what my limitations were with this brace,” she said. “It takes a lot of patience and … knowing what your body can do, but I wasn’t afraid of injuries anymore.”

Fetters still blogs about her life on Cerebral Palsy Strong but takes a more polished approach. She uses various social media platforms and the hashtag #CPStrong on Instagram to cultivate her community and feature others to try to change misconceptions some may have about the disability.

“What happens with cerebral palsy as you get older? We’re all narrating that experience through CPStrong,” she said. “We all go to school and have full-time jobs and have this disability on top of that. We’re collectively figuring that out and learning how to present ourselves and showing that we’re capable of what everyone else can do, like getting a master’s degree or driving a car.”