Patient Perspectives

Through the Pain of Fabry Disease, Artist Wes Burian Hasn’t Let Go of Hope

Devin Rose - February 28, 2023

In recognition of Rare Disease Day, artist and clinical trial participant Wes Burian shared his story about living life with Fabry disease, a lysosomal storage disorder.

When Wes Burian found out he had Fabry disease, he was a 28-year-old newlywed working his way up in his dream career in visual effects.

Burian and his wife were living in Berkeley, CA, where he worked in the art department at Tippett Studio, a well-known production company. The lifelong artist and self-proclaimed Star Wars kid had moved to the U.S. from Vancouver, BC to live out his purpose of learning how to make movies.

When he heard the news that a relative in England had died because of Fabry, Burian looked up what information he could find on the early-2000s internet and got tested for the disease. When he found out he had it, he remembers the quick shift in his mindset from being excited for the future to realizing his own mortality.

Burian’s maternal grandfather died of Fabry in his 40s. His mother also dealt with symptoms. Burian realized he had to make the most of the time he had.

“It seems like 40 or 50 is forever away, but this makes you go ‘OK, I gotta do something with my years if I have fewer years,’” Burian says.

On the other hand, Burian was relieved to find out many issues he had experienced his whole life were actually connected and caused by something outside of his control.

He is extremely sensitive to temperature change. He feels intense pain in his hands and feet. He never sweats. He often feels exhausted and had trouble running as a kid, which doctors attributed to asthma.

One of the problems with rare diseases is the symptoms are not always tied together, so it takes an extremely astute doctor to realize there’s a connection, Burian says.

“I always had a lot of weird symptoms and I was always being told by doctors, ‘this is in your head,’ or ‘it’s growing pains,’ or ‘eat more fiber,’” Burian says. He began gathering information about the disease and learning about clinical trials. He discovered the Fabry Support & Information Group (FSIG) and began meeting other people with Fabry.

In 2003, the FDA approved an enzyme replacement therapy (ERT) for Fabry. To this day, ERT remains one of few treatment options for people with the disease. Burian started the treatment.

Meanwhile, he was moving up the ladder at work. Now an art director at Dreamworks, Burian got to work with some of the most talented artists in the world and was having a great time doing it. Much of his career was spent creating the Kung Fu Panda trilogy, among other movies. In 2004, Wes’ wife gave birth to the couple’s first child, a girl.

His job was very accommodating during this period of his life. Burian continued to work and take scheduled time off for his twice weekly, hours-long ERT treatments. He acknowledges the demands of the job and the disease made him “not the easiest person to work with” at times.

Near the end of his time at Dreamworks, Burian would get so tired that he’d take naps in his office. Other times, he’d expend all his energy at work and have nothing left for his family when he’d get home in the evening. He never told coworkers about what he was going through.

In 2008, Burian and his wife had a son. And their daughter started showing symptoms of Fabry, as they knew from birth that she likely would.

“I deal with a lot of guilt,” Burian says, pausing to collect his emotions. “I gave her this.”

Meanwhile, his own symptoms were taking their toll. After 14 years of working through chronic pain and exhaustion, Burian’s body continued to degrade. He was handing off more and more responsibilities to colleagues as the symptoms got worse. He had set a high bar for himself, he says, and it was becoming harder and harder to meet his expectations. The situation became more challenging for his mental health as well.

Burian loved his job, but he knew it was time to leave. The family moved north and settled outside of Portland, OR.

Eventually, through FSIG and his own research, Burian learned about a clinical trial that he’s currently participating in. The trial is testing a gene therapy that aims to produce the deficient α-Gal A enzyme in people with Fabry disease. He was dosed for the first time on August 17, his 50th birthday.

Since the first dose, the travel, together with his symptoms, has made participation very difficult. And Burian knows the damage already done to his own cells can’t be fixed. But he continues to push forward so that, one day, his daughter and others in the Fabry community will have a better treatment.

“This effort won’t change my experience, but I don’t think it’s been in vain. I think I’m pushing science forward to take the terror of a rare disease away from the human race,” Burian says.

Now 18, his daughter is looking forward to graduating from high school soon. She is currently on ERT for Fabry disease. As she gets older, Burian hopes that he can help her navigate the disease as he wished his mother had done for him.  

Despite his struggles, Burian hasn’t let go of hope. When he’s not in too much pain, he still creates art, lately using pencils or Photoshop. One of his pieces, Sprout, was an award recipient in the EveryLife Foundation for Rare Diseases 2022 Rare Artist contest. In his description of the piece, Burian says it’s important for those in the rare disease community to share both pain and joy—pain for validation and joy to cultivate hope.

He says his art helps him be vulnerable and share his experiences with other rare disease patients.

“If I can help others feel not alone and express things that words can’t, that’s my responsibility to do.”

Devin is ASGCT's communications manager. 

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