From Diagnosis to Advocacy: Raising My Voice with RRP

June 2025

Tell me about your experience being diagnosed with recurrent respiratory papillomatosis (RRP).

I have no memory of life before RRP, a rare and challenging disease. I was diagnosed at the age of five after about a year of being misdiagnosed with asthma, respiratory infections, and even accused of faking symptoms for attention. It wasn’t until I presented at Le Bonheur Children’s Hospital in Memphis, Tennessee in the ER that an ear, nose, and throat specialist who had been at San Francisco saw me and recognized the symptoms. I was in surgery that same day. My first real memory is being in the oxygen tent in the metal crib after surgery at only age five. This disease and repeated surgical interventions became my life. It became the life of my parents. In 1971, the year I was diagnosed, treatment consisted of general anesthesia and cold steel removal of the papilloma. 

Over 50 years later, over 250 surgeries later, and over 30 years with tracheostomy, the only approved treatment for RRP is still surgery. We do have some options in the drug development pipeline, and we do have patients having success with systemic bevacizumab, which is a monoclonal antibody that targets vascular endothelial growth factor A (VEGF-A). However, the only method that is approved is surgery even after all these years. I think of all of the times I was bullied for my voice, unable to read my child a book before bed, unable to go swimming in the summer because of my trach, the financial toll a lifetime of surgery has had on my family, and the mental toll of surgery on not just me, but also my spouse, my children, and my parents. It is because of the cost of RRP to my life and the lives of those around me that I decided that I would do everything in my power to change the story of those diagnosed today -- my story would never be anyone else’s story. 

Where did you find support after your diagnosis?

My parents had no support when I was diagnosed. I had no support as a child, teenager, or as a young adult. The Recurrent Respiratory Papillomatosis Foundation (RRPF) was formed in the early 1990s and was the first support group for RRP. Today it remains the premier organization for RRP in the world and the only organized nonprofit for RRP in the United States. I was a RRP patient before policies to prohibit discrimination based on pre-existing conditions through the Patient Protection and Affordable Care Act (PPACA), so I know (and my parents too) the struggle that those with chronic health issues faced with insurance portability, waiting periods, and pre-existing conditions. As a teenager, the Shriners Health Organization helped my family with access to my RRP care, including surgery. My spouse did not change his job once we were married until the PPACA was in place. I would put my health at risk to get past a waiting period. 

What have you been working on related to your advocacy activities?

As I mentioned, the RRPF has been at the forefront of advocacy for RRP. In 2022, I led a patient-led listening session with the U.S. Food and Drug Administration (FDA), providing firsthand insights into the patient and caregiver experience with RRP. This session aimed to inform FDA staff about the real-world impact of RRP and the need for new treatment options. I have delivered keynote speeches at prominent events, including the ACS National HPV Vaccination Roundtable and the National Organization for Rare Diseases Summit, raising awareness about RRP and its implications. The RRPF was honored with the 2022 Rare as One Award from the Chan Zuckerberg Initiative, recognizing its efforts to build a stronger RRP community, just to name a few advocacy activities. I have worked with so many other organizations to help spread the word about RRP.

What has been the most significant change?

Six years ago, a voice came out that we had not heard in over two decades. Without knowing why, I made the decision to simply ask God to use it. No boundaries. Just use the voice. Three months later, I was asked to take over the RRPF, soon thereafter was awarded the Rare as One Award, and the promise I made to myself that my story would never be another person's story. I have been changed in ways that I could not even have dreamed of. Trusting key opinion leaders to teach me what I did not understand, trusting myself to speak on behalf of an entire community, knowing our community deserved more than we had been given, and that our voice was going to be what drove progress forward, and we, as a community, could create the paradigm shift away from surgery-having that confidence was from a power far greater than my own. 

What is your advice to others about the HPV vaccination?

Take advantage of HPV vaccination. My mother did not have HPV vaccination as an option in the 1950s and 1960s. I would not have RRP if she had been able to access this life-saving HPV vaccination. She would not have had a lifetime of guilt, even though she had nothing to feel guilty of. We have a tool that can prevent RRP (and more) for our children and future grandchildren. We can eradicate RRP, which is far better than a cure. Virginity isn’t prevention. 

What would you say to others who are living with RRP?

Today has true hope. Patients have hope today that we could only dream of just a few short years ago. Two potential therapeutic options are in the drug approval pipeline. We have bevacizumab that is changing the life of those with aggressive RRP. While surgery is still the only approved treatment, we can see the light at the end of the tunnel. A real light-not false promises. Life can be sweet, even with RRP. I am proof of that.