Actress Morgan Toll, 28, has recurrent respiratory papillomatosis (RRP), a rare disease caused by human papilloma virus (HPV).
Those who encounter Morgan Toll might assume her raspy voice means she has a sore throat.
But the 28-year-old actress and teacher based in Maryland has actually been dealing with hoarseness all her life.
“It’s like clockwork. I know if I go out of the house, I’m going to be asked about my voice. ‘Oh, you have laryngitis,’ or you have the people that say, ‘You should drink lemon and tea, it will help,” Toll told InsideEdition.com. “I love my voice because it shows all of the things that I’ve been through and had to fight through to be alive.”
Toll has recurrent respiratory papillomatosis (RRP), a rare disease that mothers with human papilloma virus (HPV) can sometimes pass along to their children between pregnancy and birth.
“[RRP] is a viral disease of the vocal cords or larynx, the trachea and the lungs,” Dr. Simon Best, an otolaryngologist at Johns Hopkins Voice Center, told InsideEdition.com. “It’s caused by the low-risk HPV virus types 6 and 11.”
Like some strains of HPV, RRP can cause papillomas, or warts, that manifest themselves on the vocal cords instead of the genitalia. As papilloma grows on the vocal cords, the airway becomes more and more narrow.
“If papilloma patients die of the disease, and some of them do die, it’s because of the involvement of the trachea and the lungs,” Best said. “Eventually they just obstruct your breathing to the point where you suffocate.”
He explained about one or two in every 100,000 babies born can get RRP and there may be up to 10,000 cases in the United States. The disease is not contagious.
Because the disease is so rare, misdiagnoses happen often and could delay a patient’s path to treatment.
Toll was diagnosed with RRP as a baby and had her first surgery at 8 months old.
To date, she’s had more than 300 surgeries related to the diagnosis.
“There has been times when I was younger when I just stopped breathing and I had to be rushed to an ambulance,” she said. “They had to give me a trach [tube] because I almost went into cardiac arrest because I was so low on oxygen.”
Toll was about 5 or 6 years old when she had her first trach tube put in and had it taken out when she was about 12 years old, when doctors did a full reconstruction of her airway.
Because the papillomas kept growing back, Toll also had to have surgery nearly every week as a child.
“Getting laser surgery is painful,” Toll said. “It’s like having a really bad sore throat. You feel like your throat is on fire.”
What’s worse was the bullying, which Toll said she encountered often.
She was finally declared in remission after her reconstruction surgery but the symptoms came back when she was around 20 years old.
“I started noticing I was losing a lot of breath,” Toll said. “It was hard for me to walk across the room, it was hard for me to walk upstairs.”
That’s when she went to see Best, who said her airway was only 2 millimeters wide, which is about the same width as the thickness of two pennies stacked on top of each other
“When I first met her, her airway was so narrow it was unbelievable someone could be breathing through something so small,” Best said. “One of the consequences of RRP is the need for repeated surgeries in the vocal cords and the airways and while it can remove papillomas and improve breathing and the voice, it can eventually take its toll in terms of scar tissue and stenosis, or narrowing of the airway. That’s exactly what happened to Morgan.”
As an adult, Toll had to live with the stigma of using a trach and a T-tube, and now she no longer has vocal cords. She also struggles with following her passions despite her illness and monthly surgeries.
“It was so natural growing up with it – it didn’t feel like I was sick,” Toll said. “But as you get older, you realize all the things you’re missing just having to deal with the recovery process and surgery. Surgeries were not always the most comfortable thing with all the pain afterward.”
Especially difficult was pursuing her passions in acting. Toll said she often gets told that her voice and condition would make her only eligible to take on roles of hospital patients.
“It’s been hard for me as a person to be able to say, ‘This is who I am and this is what I want to do,’ when so many people have said to me, ‘you can’t do it,’” Toll said. “[I have] to have that courage to say that despite my voice and despite my illness, I can do anything I want to do.”
She said she is often compared to her younger sister, 21-year-old Olivia Holt, who starred in Disney series "Kickin’ It" and now plays a role on Marvel’s "Cloak & Dagger."
“I am extremely proud of her. I think she has worked so hard for what she has,” Toll said. “But I also have worked extremely hard. I’ve had friends and family members forget that I wanted to be an actress. So many people have said to me, ‘You want to be an actress, too, like your sister?’”
But Toll said she continues to pursue her goal, teaching younger kids to be passionate about acting and theater, and even developing her own web series, "Frankensitter."
“I play a lot of strong, villain-ish female leads,” Toll said. “I use my voice to that advantage as well because I have that deep, raspy voice.”
She hopes her story can encourage everyone to get vaccinated from HPV to prevent more children from being born with her disease.
“Here is a vaccine that can get rid of this horrible disease that affects children and adults to the point of death,” she said. “If every single person got the vaccine today, the RRP would be vanished from the world in the next generation.”
Toll also continues to hope researchers can come up with a cure.
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