At first, it didn’t seem all that serious.
Robert Sershon was 22 and serving with the U.S. Army in Germany when his voice began to get raspy. He was treated for a probable cough. Then, allergies. Then laryngitis.
But six months later, he was having difficulty breathing, and he was sent to an ear, nose and throat specialist who realized that Sershon had contracted an extremely rare disease: recurrent respiratory papillomatosis (RRP).
A tumor related to human papillomavirus (HPV), types 6 and 11, had begun to grow between his vocal cords to the point where it interfered with his breathing. In a span of the next four months, he underwent three surgeries.
But there is no cure for RRP, nor is there any FDA-approved treatment. The only means of care is repeated surgeries. In the 35 years since Sershon was diagnosed, he has undergone more than 100 of them. And he knows of others who have endured four times that.
Because there are more than 100 types of HPV, only a very small population actually contracts RRP. Estimates vary, but it is thought that RRP affects about 4.3 per 100,000 children and 1.8 per 100,000 adults.
Due to the rarity of this disease, 33 years went by before Sershon even met someone else face-to-face who had it.
RRP is especially aggressive in children, who don’t understand why they must undergo so many surgeries to keep their airways clear. For all the challenges he faces, Sershon has particular empathy for the disease’s youngest sufferers, as well as their families.
“I just can’t imagine being a parent having a 2- or 3-year-old diagnosed with this disease,” he said.
Scarring from multiple surgeries damages the vocal cords and, like other RRP sufferers, Sershon has difficulty speaking. After receiving his medical discharge, he went on to college and then to a successful law enforcement career, but he met regular challenges associated with his speech. However, he said, “I wasn’t going to let anything hold me back.”
As surgery can aid in his ability to communicate, he estimates that he probably underwent more procedures than necessary during his career.
“I can’t communicate if they can’t hear me,” he said.
This factor plays out regularly in his daily life. His wife, Shawna, has to place the orders at drive-through windows, and he can’t speak in restaurants due to competition from the ambient noise. Cigarette smoke or other fumes affect him, as does cold temperatures. Sometimes, he is forced to communicate with his wife of 22 years via a white board.
In 2018, Sershon was diagnosed with a rare form of leukemia. He was treated and has been in remission since 2022, but the demands of chemotherapy necessitated a long time between RRP surgeries. As a result, he had no voice for almost 14 months.
Sershon’s quest to find the best possible solution to his condition ultimately brought him from his native Oklahoma to St. Augustine.
In 2023, he went online to find a top physician working in the field and discovered Dr. Amy L. Rutt, an otolaryngologist with the Mayo Clinic in Jacksonville.
“We basically sold our house, packed up, found a place to live, rented for a year, and then bought this house last year,” he said, seated in his newly built home north of St. Augustine’s airport.
He said Rutt is on the cutting edge of treatment for this disease.
In spite of the hardships Sershon has endured because of RRP, he retains a positive attitude. He follows the developments of new treatments, hoping especially for FDA approval of one currently on his radar.
“We’re pretty optimistic,” he said. “At least I am. There’s hope for the future, and there’s hope for the children.”
And Sershon is among those who help keep other RRP sufferers informed and hopeful.
A member of the RRP foundation (RRPF) since 1995, he traveled this month to Washington, D.C., to speak on a panel during the 2025 international RRP Awareness Day event hosted by the RRPF and Precigen, a biopharmaceutical company advancing the next generation of gene and cell therapies.
Sershon currently sits on the RRPF’s Patient Advisory Committee and hopes to conduct meetups with others battling this disease. It may help mitigate the sense of isolation they experience.
To learn more about this disease, the foundation and more, go to RRPF.org.
