You are unique, strong, and will prevail at every surgery required to remove the growths. I am 78 year old, African-American female who was first diagnosed at the age of nine (juvenile onset). My most recent surgery was in April 2026, by way of KTP laser. Throughout these numerous years of living with RRP, I have been able to help others with encouragement, loving compassion and understanding when the papillomas keep resurfacing. I am blessed that I have not experienced having the virus block my airway entirely, but enough to make voice projection difficult with tightness in vocal cord area when I try to talk. I would also add, to hang in there! Work with your healthcare provider as a partner; keep abreast of what RRP is doing in terms of research, but most importantly, maintain a strong support system (family, friends, church) that are there when you need them.

Neverending story of having to grieve your old voice and learn to live with a new one! This has been my “mantra” since my RRP diagnosis back in 2017. But how do you explain that to your family & friends? They are extremely supportive, but how do I explain the feeling of loss and having to explain why I sound different from the last surgery? Why simple tasks like going out for a meal or attending a party may seem like fun to others, but for me it causes major anxiety…..anxiety about where I sit to ensure I don’t have to shout and strain my voice, possibility of having to leave early in case I have vocal fatigue and pain. I often don’t speak out in avoidance of sounding like a “victim”. I’m quick to make the first joke about my lack of voice to almost armour myself for oncoming jokes. I play my condition down as ‘one of those things’ and the usual ‘grateful that I have some sort of voice’ but sometimes I just want to hear from family and friends, ‘We don’t understand what you are experiencing but how can we support better’.

Living with RRP for 53 years has been a journey filled with challenges, resilience, faith, and gratitude. I was diagnosed at the age of 2 and have endured more than 400 surgeries throughout my life.

Growing up with a tracheotomy until the age of 13 shaped much of my childhood and teenage years even to now. While many people may only hear a different voice, they do not see the strength, fear, determination, and perseverance behind it. The papilloma’s have stopped growing in my larynx, but they are now growing in my lungs.

Even through that challenge, God has opened new doors for treatment and hope, and for that I am incredibly grateful.

One of the hardest things is when people ask, “What is wrong with your voice?” The truth is, nothing is “wrong” with my voice. My voice tells a story (a long one). It is unique, and it works for me. It has carried me through surgeries, fear, friendships, work, advocacy, and general life itself. It may not sound like everyone else’s, but it is mine, and I am thankful for it. I’ve worked hard for this voice. There have been many times when my voice became worse and I become a recluse.

That is difficult for my family to fully understand, and honestly, I do not expect everyone to completely understand those feelings unless they have walked this journey themselves. But I do hope people will try to put themselves in someone else’s shoes before making judgments or assumptions. Not every journey is visible to the outside world.

Compassion and understanding matter more than people realize because everyone is carrying battles we may never fully see. I’ve thought about coming up with some real cool answer! But, I haven’t yet. Through all of this, I have been blessed with incredible support. My family has been loving and understanding throughout the years, and I am deeply grateful for the outstanding care from my otolaryngologist and my hematologist/oncologist. Their dedication, compassion, and commitment to my care have made such a difference in my life. I am also thankful for finding RRPF and the connections it has given me with others who share this disease. There is comfort in knowing you are not alone. Being connected to others who truly understand the struggles, fears, victories, and emotions that come with RRP has been meaningful beyond words.

My journey has not been easy, but it has made me stronger, more compassionate, and more appreciative of every blessing life brings. Every surgery, every setback, every fear, and every victory has shaped who I am today.

While RRP has been part of my story, it does not define my spirit. If my journey has taught me anything, it is that we should all lead with compassion. We never truly know the battles someone else is facing. A little kindness, understanding, and empathy can make more of a difference than people realize. Everyone’s journey is different, and no one’s path should be judged from the outside looking in. I am grateful for every day, every opportunity, every advancement in treatment, and every person who has walked beside me through this journey.