EXCLUSIVE: Utah man who underwent 120 surgeries advocates for rare disease awareness in Washington, D.C.

SALT LAKE CITY (ABC4) — A Salt Lake man who underwent over 120 surgeries due to a rare disease is traveling to Washington, D.C., to advocate for people going through the same experience that he did.

On June 11, William Bustos will be speaking on a panel in Washington, D.C., at the 2025 International RRP Awareness Day event hosted by the Recurrent Respiratory Papillomatosis Foundation (RRPF) and Precigen.

The current treatment for Recurrent Respiratory Papillomatosis (RRP) involves repeated surgeries, and has no FDA-approved treatments, according to the RRPF. This disease is rare and affects less than 0.1% of people living in the United States.

“RRP is a rare disease caused by HPV6 or HPV11. HPV is one of the most common viruses in the entire world. Basically, if you’re in your 40s, you have been exposed to HPV at some point, and you likely never knew it because you were asymptomatic,” Kim McClellan, president of the RRPF, said.

The RRPF helps to fund research and support patients who have RRP. They participate in patient advocacy groups worldwide and spread the importance of HPV vaccinations and research.

Growing up with RRP

Bustos spoke about his experience with RRP in an interview with ABC4. The 55-year-old has undergone more than 120 surgeries since he was a child. Bustos said that his symptoms started more than 48 years ago, just before he turned seven years old.

“By age seven, we were seeking out medical opinions because my breathing started getting labored. My voice, you started hearing a change, a softening, if you will, and they thought it was tonsillitis,” Bustos explained.

His tonsils were removed in hopes that it would get rid of the symptoms, but Bustos said it didn’t. Ear, Nose, and Throat (ENT) specialists struggled to diagnose the issue. A couple of years later, when Bustos was 9, the symptoms continued to affect him while he was at a summer camp in Montreal.

“When I was running a 5K a couple weeks into the camp program, I remember just slowing down running and not being able to keep up… I collapsed and passed out,” Bustos said. “I was unconscious for a few days because I went through a serious surgery, and I woke up with a trach… They had performed a tracheotomy. That was tough.”

Bustos said that he woke up strapped to the bed, and when he found out about the trach, it changed the way he viewed his life. The trach in his throat made it difficult to live day-to-day. It wasn’t only painful, but somewhat traumatizing. He often felt different than other kids, and said that they could even be “cruel.”

“A lot of painful days. You have to understand, when you had a trach back then, the trach was a two-piece mechanism of steel, so you had to clean it twice a day with hydrogen peroxide,” Bustos described.

His condition started when he was living in New Jersey, but by age 14, Bustos moved to Utah. After working with Bustos for roughly six months, an ENT specialist offered a new form of treatment.

“This wonderful doctor… said, ‘There’s research to suggest that the trach is actually stimulating the papilloma growth in your vocal cords, and I want to take it out,'” Bustos recalled. “That was a shock because I knew how dependent I was… He took it out. I had to let the hole collapse on its own and heal by itself. At least that’s how they did it back then. And life went on.”

After the trach was removed, Bustos said that doctors expected his RRP to improve with age, but it didn’t. He was still requiring frequent surgeries, but those began decreasing to once or twice a year during one period of his life. Bustos says this was difficult to cope with.

“By age 22, I realized, all right, I need a whole paradigm shift. I need to see what I can do with this, see what my life can be, and just focus on the positive,” Bustos said.

During college, Bustos decided to turn things around; he didn’t want to be “self-destructive” due to the difficulties he was facing. He said that people were more open-minded at diverse at college, and that helped him realize he needed that “paradigm shift.”

Bustos admitted he spent “a few decades” trying to ignore the problem and wouldn’t speak about it with people. As he’s gotten older, he said that he’s realized he has something to contribute.

“I’m now retired, and I think this next phase of my life is… there’s something there for me to really contribute and say, ‘Look, I’ve got 48 years of history behind me with this condition. Let me tell you the good, the bad, and the ugly, and how do you cope with it,'” Bustos told ABC4.

Attending the June 11 panel and speaking on his experience with RRP is all part of this effort. He said that it’s cathartic to share his experience with others and have a community with people impacted by RRP.

“That’s probably the biggest message of all. And I learned a long time ago that success is never achieved alone. And while you can succeed at life to a certain level, the hype behind that success is far higher when you deal with others,” Bustos concluded.

Bustos is a big outdoorsman and has not let RRP “get him down.” According to the RRP Awareness Day Team, he has “run with the bulls in Pamplona, hiked the Inca Trail in Peru, solo sky-dived, and earned an advanced scuba diving certification.”

The RRPF president, McClellan, also grew up with RRP. She shared that while it makes life difficult in many ways, it is not the end.

“Life is good, even with RRP. For example, I myself finished my education, had two wonderful children, got married… all the things. Life is different, probably, than what my parents thought it was going to be for me, but it was still, and is, very good,” McClellan stated.

For more information on RRP and how you can support patients, visit RRPF’s website here.