A talk with the amazing William Bustos
At some point, each and every one of us reaches a place where concerns or conflicts have placed hurdles—either low or high, life-changing, or simply annoying—in our paths. It can be easy to lose our footing during these challenging times and be left feeling off balance with little focus or hope. That is why, as my audience knows, I am always looking for stories that both inspire and encourage us to lead a life that is Better Than Before, physically, mentally and spiritually. And why, too, William Bustos’ journey truly resonated with me.
Imagine facing more than 120 surgeries for a disease that is so rare it affects less than 0.1% in the US —and has neither a cure nor any FDA-approved treatments. Yet William refuses to let it slow him down. The dad of four has run with the bulls in Pamplona, hiked the Inca Trail in Peru, solo sky-dived and earned an advanced scuba diving certification—all while trying to mask his condition.
You see, William, 55, was diagnosed with Recurrent Respiratory Papillomatosis (RRP) at age seven and had to undergo a tracheotomy by the time he was just nine. RRP is characterized by the growth of tumors in the respiratory tract caused by the human papilloma virus (HPV) a very common virus, frequently carried by people of all ages without any symptoms. The current course of care for RRP is only repeated surgeries. While the tumors are almost always benign, they are prone to constantly grow back—therefore the name ‘Recurrent.’
According to published research, 97% of patients with RRP who undergo more than 10 lifetime surgeries can experience irreversible damage to the voice box. To give this community a voice, William traveled from Salt Lake City to DC last month to join other patients, caregivers, medical experts and advocates in a panel at the 2025 international RRP Awareness Day event, hosted by the Recurrent Respiratory Papillomatosis Foundation and Precigen.
It was an honor to interview this remarkable man and be able to share his equally remarkable story below:
JWM: William, can you take us back to your first memories of being diagnosed with Recurrent Respiratory Papillomatosis? What symptoms were you experiencing, and what was that like as a child?
WB: I was seven when I started to have problems breathing, catching my breath and my voice began to sound different. I recall the first doctor I was examined by was confident that all I required was a tonsillectomy which was very common for kids my age back then. However, even after that, my breathing remained abnormal, and I kept seeing different doctors trying to diagnose the reasons why.
JWM: That obviously was not the cure! But when did that become clear?
WB: About a year and a half later, my uncle in Montreal convinced my mother I should spend a summer with him. As with many nine-year-old kids, he enrolled me into a summer camp. While there and running in a 5K competition, I collapsed and passed out. I was rushed to the hospital only to become conscious a few days later with a trach in my throat. It was at that time that I was properly diagnosed with having laryngeal papillomas.
JWM: This is not a disease that many of us, myself included, are familiar with. How do you explain it to people who’ve never heard of it before?
WB: I frequently dismiss a person’s curiosity about my soft-spoken voice and/or labored breathing as my having had an accident many years ago. Or I make jokes about it such as ‘I was at a concert last night’ or ‘I was yelling at my wife.’ However, if a friend is genuinely interested, I will take the time to explain my papilloma’s and scar tissue circumstances coupled with my regular surgeries.
JWM: Bringing it closer to home, how did you and your family cope with the diagnosis?
WB: That’s a tough question! It wasn’t easy because the diagnosis was confirmed when my tracheotomy was performed, an event that changed my life forever. My mother was divorced when I was seven and she raised my brother and me as a single parent. She worked three jobs until I was 22 years old, so I was left to care for my daily throat issues primarily by myself. It was hard! My mother has always been a proud woman, and she cried a lot when she could see how I struggled to have a ‘normal’ life.
JWM: How did that impact your childhood and the way others treated you?
WB: Another tough question! The cliche, ‘kids can be cruel’ is an understatement. I hated my trach. Even now, I would rather die than ever have another one, a bit melodramatic but true. So many things were painful on so many levels from kids and teachers (Yes! Teachers! ) alike teasing me by giving me unwanted nicknames or boys and girls who would be afraid to be close to me. My trach scared them. I was often ostracized. In hindsight, I didn’t cope with it well at all.
JWM: Now, with more than 120 surgeries behind you, how do you prepare mentally and physically for each one?
WB: Surgery days have been filled with intense anxiety and knowing to prepare for ‘voice rest’ of up to five days. I would type up short explanations inside my Notes on my iPhone or on paper so I could have references quickly ready to show people, because I knew I wouldn’t be able to speak. The anxiety of surgery is overwhelming; worrying about waking up with a trach again or worse—fear that my doctor may tell me the papilloma’s had spread into my lungs. Going into surgery is such a lonely feeling.
JWM: I read that RRP is often described as an ‘invisible disease.’ What does it mean to you to try to mask your condition in daily life?
WB: First off, I don’t like receiving pity from strangers, so I try to give them a different perspective. For example, I often tell them ‘10 fingers, 10 toes.’ My visual appearance is normal, but when I speak, I definitely stand out. This disease can often discourage you from building new relationships because of the vulnerability you need to exercise upfront.
JWM: Have you experienced long-term effects from repeated surgeries, especially related to your voice or breathing?
WB: Yes! My vocal cords are damaged beyond repair. I don’t speak with my vocal cords; my body has learned to create sound my moving muscles or tissues. It’s crazy to realize you don’t need your vocal cords to speak. I’m grateful my body has readjusted.
JWM: Now for the Better Than Before part, William. Despite your condition, you have lived an incredibly adventurous life, as I mentioned earlier—skydiving, running with the bulls, hiking the Inca Trail. What drives you to take on such challenges? And are there any moments during those adventures when your condition challenged you—or maybe even inspired you to keep going?
WB: It would be easy to use my disease as an excuse why not to live my life to the fullest. You should know that I come from a family of immigrants. My mother immigrated from Ecuador as did several of my uncles and aunts. One of my uncles lost his right leg at age 18 and is very successful. He’s never allowed anything to slow him down, so why should I?
JWM: Changing gears here for a moment, what more do you think the medical community can do about RRP?
WB: Above all, they need to place a strong emphasis on finding a cure. I believe many ENT’s have defaulted to treating the disease with repeated surgeries. That’s not the answer and it’s not an effective Band-Aid. In addition, I feel that they need to be more empathetic and extend real compassion.
JWM: What gives you hope right now— research, community, or personal progress?
WB: Both the research being done as well as the community that exists. That said, I’m still in shock at how many people are organizing behind RRP. I had no idea. I am beginning to feel like I’m part of the community and not so isolated. I’m grateful to all of them and I hope I can contribute.
JWM: What advice would you give to a person newly diagnosed with RRP?
WB: That you’re not alone and while you may endure challenges in life, you’ll still able to have a full life.
JWM: Finally, William, what can all of us, whether we have RRP or not, take away from your courageous journey that will inspire us to live a life that is Better Than Before?
WB: I would say that the way you live life is a choice. Your choice! I choose to push my limits, even though I’ve come close to death a couple of times, in particular while swimming and wakeboarding. I do worry about dying at times. Swimming remains my biggest fear. I suppose that’s one of the reasons I have been an avid diver.
JWM: So you face your fears head-on and don’t let them stop you from living your life to the fullest! Good advice for us all. My personal mantra has always been: I have the Wisdom to accept that I have obstacles to overcome, the Power to adapt to the lifestyle changes I need to conquer them, and the Courage to move on. You, William, are the embodiment of this mantra, and the gold standard to which all of us should aspire. I thank you for your time, and wish you an abundance of health, happiness and success, as you continue on your journey from survivor to thriver.
Everyone, if you’d like more information on RRP, it is available at: https://rrpawareness.org.
