Although a recurring motif throughout her family tree, Kristy Taylor never considered the possibility of being diagnosed with ataxia herself. Now, after a difficult adjustment period, she’s pushing back against society’s expectations, to break the stigma surrounding people with disabilities

By Joe Rumney

A long history with ataxia

Kristy Taylor’s upbringing looked perfectly normal in her eyes—she was raised in southern California by a single mother—her loving family just happened to have spinocerebellar ataxia type 10 (SCA10). Her mother, uncle, grandfather, his two brothers and their mother all lived with the same rare genetic disease, and it can even be traced back further into their family history.

“Spinocerebellar ataxia type 10 (SCA10) is one specific type of ataxia among a group of inherited diseases of the central nervous system. As in other inherited ataxias, SCA10 is caused by genetic defects that lead to impairment of specific nerve fibres carrying messages to and from the brain, resulting in degeneration of the cerebellum (the coordination centre of the brain).”¹

Exposed to disability from an early age, Kristy couldn’t have imagined life any differently.

“I was always aware of ataxia and growing up with multiple family members with other disabilities too, it always just felt normal to be part of a family with some people having a disability.”

Despite being aware of the impact ataxia had had on her family, and her now busy life as a model, Kristy never once pictured living with the diagnosis herself. “It wasn’t until later in life when I started to experience similar symptoms to my mother when she was diagnosed.”

In her mid-twenties, walking in high-heeled shoes became progressively more difficult for her—a fundamental part of her job as a model. “Certain physical things suddenly became harder. Then one day, I tried to grasp a pen on the table, and it just spun across the room. And that same thing happened to my mother. I recognised this and said to myself, ‘Oh, I should get tested because it’s now all adding up.’”

Consequently, in 2013, Kristy was diagnosed with SCA10 through genetic testing. “I cried when I was diagnosed. Having a physical disability was shocking to me, and because I couldn’t move the way I used to, I thought I had to quit modelling.”

After her diagnosis, Kristy drew back from society. “When it started to affect me, I did feel ugly. I just wanted to hide away.” And when she found the courage to start properly living again around seven years later, COVID-19 hit, and she started experiencing traumatic seizures.

“Especially when you’re first diagnosed with a disability you just want to hide and you’re embarrassed about what people think. But I found out years later that most people are too busy focusing on what they are doing.”

One day, Kristy suddenly felt an overwhelming sensation across her body. Assuming she was about to have a heart attack, she went in search of her husband. “I reached the top of the stairs and blacked out. That’s when I had my first seizure. Then the paramedics came out to take me to the hospital, where they managed to stabilise me.”

Less than a day after being discharged from the hospital, Kristy found herself having more uncontrollable seizures, and her husband found her lying helplessly on the floor the next morning. “After having these non-stop seizures and almost dying, I decided right there and then to finally learn more about ataxia.”

Breaking away from society’s judgement

As SCA10 can frequently restrict movement, Kristy struggled for a long time to come to terms with adjusting to a new pace of life. She had several accidents and regularly had to take time out to recover from injuries. “It may look and sound like people with ataxia are drunk, but we’re not. Everything we do has to be slow. You have to reprogram your mind to be okay with living life slower.”

After leaving her modelling days behind (for now), Kristy felt she needed to take a less active career path. While working for a large company, Kristy and her colleagues would often watch diversity training videos, covering topics such as proper etiquette in the workplace and how to show compassion and respect towards those with disabilities.

“In reality, as my condition progressed and I couldn’t complete tasks as quickly, my employers did not embody those ideals—it was actually the opposite.” Her doctor officially wrote to her employers explaining her ataxia, noting speech and mobility issues, but there was no attempt to accommodate her abilities. “They were annoyed that I couldn’t perform as quickly as I used to.”

There was a time when I thought I was the victim. I’d think, “Why can’t I move fast?” But that’s a limiting mindset, therefore it limited my life—no longer.”

“My ataxia was there in black and white, but my employers acted like they didn’t see it. The situation left a bad taste in my mouth; I did not want to be there any more.”

After saying goodbye to corporate life, Kristy recently rediscovered her love for modelling again, and is currently working part-time to rebuild her portfolio. In light of her diagnosis with SCA10, she wants to raise awareness for more opportunities for people with disabilities in creative industries. “My goal has become to crush the stigma that people with disabilities can’t be attractive.”

Like Kristy, her grandfather, who also lived with SCA10, worked in a creative field as an established actor. “Once he started to exhibit more symptoms, the management told him not to come back to the set. If his situation happened today, I hope they wouldn’t tell him that.”

“We’re not quite where we need to be with equal representation yet, but it’s better than we’ve had before. There’s still work to do.”

Becoming an advocate

Since her leap in accepting her SCA10 diagnosis, Kristy has slowly been building a support network around her, firstly becoming involved with the National Ataxia Foundation, based in Minnesota. “It was only when I got involved that I finally found myself in a better state of mind. I’m so thankful to the National Ataxia Foundation for sharing their vast knowledge of ataxia with me.”

Kristy encourages anyone who lives with a rare disease to reach out to a non-profit or support groups. “We need these people to participate in these groups. Information that took me years to find out, I could’ve found much sooner, so I think it’s important to have a resource to refer to because so often with rare diseases, doctors don’t know much at all.”

“People living with ataxia are sharing their stories and they feel lost. Everyone asks questions non-stop, and it can get frustrating having no answers.”

So far, she has grown to be one of the many recognisable faces in the ataxia community, speaking at two recent National Ataxia Foundation conferences and last year’s Annual Ataxia Conference alongside her own neurologist, Dr Oguh from Cleveland Clinic. Kristy has also contributed to several clinical trials in the hope of future treatments and possible cures.

Over a decade since her diagnosis, Kristy tries to live as independently as possible, and advises others with ataxia to do the same and consider living in a ground-floor property to avoid the need for stairs, which can add further stress. “If diagnosed early enough, you can widen door frames for wheelchair access in anticipation and plan for other things that make life easier.”

Speaking in her YouTube video, “Newly Diagnosed with Ataxia”, Kristy tells her audience: “For any of you who may feel frustrated or in the dark, you’re definitely stronger than you think you may be. The main thing I want to do is pass down the information I learned on how to manage ataxia to people who are newly diagnosed.”

She is also dedicated to two Facebook support groups—the recently founded Age 30–55 with Ataxia Support Group and Ataxia Awareness, Las Vegas, which, despite the name, reaches ataxia communities from around the world.

For more information, you can follow Kristy’s Instagram, and subscribe to her YouTube Channel.

Credits: portrait image: @thesevvone, modelling photo: @tslclick

References

[1] https://www.ataxia.org/wp-content/uploads/2019/04/SCA10.pdf

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