Feature Article: RRPF – “While We Breathe, We Hope”

Many people know that human papillomavirus (HPV) causes genital warts and certain types of cancer (e.g., cervical, anal, and throat), but they may not know about another condition caused by HPV. Known as recurrent respiratory papillomatosis, or RRP, this rare condition is characterized by the growth of benign (noncancerous) tumors, or papillomas, around the vocal cords as a result of HPV infection. The papillomas cause voice changes and, in some cases, breathing difficulties. People affected by RRP can experience a series of symptoms, including hoarse or raspy voice, noise when breathing, choking, shortness of breath, difficulty swallowing, and snoring. In some cases, affected individuals may experience repeated bouts of pneumonia, and affected infants may be diagnosed with “failure to thrive,” meaning they do not grow at a reasonable rate compared with other infants of the same age.

Because there is currently no cure for RRP, affected individuals often require surgery to remove the papillomas, particularly if they interfere with breathing. Some individuals require frequent surgeries, and in the most severe cases, they may require a tracheostomy. During a tracheostomy, an opening is made in the throat to insert a tube in the windpipe, enabling breathing through the opening rather than through the nose and mouth. This can be a long-term solution for a small number of people with RRP, and because air exchange occurs without passing the vocal cords, it can interfere with speaking.

RRP can affect children and adults, known as juvenile- or adult-onset RRP, respectively. It’s estimated that about 20,000 people worldwide are currently affected by RRP. Because of the relatively small number of affected individuals, families dealing with this condition were often isolated. So, in the early 1990s, two families came together to create the Recurrent Respiratory Papillomatosis Foundation (RRPF). Recently, the Vaccine Education Center team had the opportunity to speak with Kim McClellan, President of RRPF.

• Keep reading to find out more about RRP, the goals of the RRPF, and why Kim said that with the development of RRPF, “the RRP community began to have a voice.”
• Download a PDF version of this article.