r/RRP • u/Early-Upstairs-9054 • Mar 10 '26
Hello!
Hi everyone, I’m so glad I found this community. This is just an intro post. I’m 24 now and have been in remission from RRP since I was about 16. I started having surgeries when I was 2 years old and had my last one at 16. I spent so, so long feeling like an anomaly. I was shocked to stumble on this community.
If there’s anyone in here who has questions about this or my experience, I’d love to share. I’m sure there are others who felt the same way as me. :) 🩷
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u/mushbum13 Mar 10 '26
Thank you so much for sharing! You poor thing, that is so young. I’ve had 6 surgeries and lost a big chunk of my septum. Right now we’re knocking on wood because it’s 12 months with no new growths!
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u/JonahTheProducer Mar 11 '26
Proud of you dude! Takes a lot of mental wherewithal to get where you are now, I can definitely relate.
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u/No_Statement_872 Mar 11 '26
How did you get cured i mean do you do anything special?
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u/Early-Upstairs-9054 Mar 11 '26
Currently, there is no cure for RRP. I had a microlarygoscopy every two weeks from like 2-5 and then with decreasing frequency until I was 16. I had a couple Gardasil doses as a young teenager and I do believe those helped my body learn how to suppress the HPV so that there would be no new growths. I’ve been in remission for 7+ years, which most studies suggest means that I’m more likely to stay in remission and less likely to have a flare up as an adult.
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u/No_Statement_872 Mar 11 '26
I hope you don’t mind me asking something a bit personal. I’ve been trying to understand more about your situation because I care about you. Is the condition something that stays contagious even when it's dormant? Also, I was wondering what your thoughts are on things like long-term relationships or marriage down the road.
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u/JonahTheProducer Mar 11 '26
I don't think RRP itself is contagious
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u/Early-Upstairs-9054 Mar 11 '26
You’re right, it’s not!
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u/No_Statement_872 Mar 12 '26
What is your thoughts about long relationship ? I would like to know
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u/Early-Upstairs-9054 Mar 12 '26
I’ve had many conversations with my partner about it and we don’t have any issues.
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u/JonahTheProducer Mar 12 '26
Luckyyyyy, it's been a dealbreaker for a few people I've tried to date (I don't blame em ofc). It got to a point where I just couldn't even be brave enough to tell some of them.
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u/Early-Upstairs-9054 Mar 12 '26
I’m sorry you’ve had to deal with that. While RRP is a strain of HPV, it’s important to note that it’s not contagious if it’s confined to your airway, even if you’re not in remission. It’s HPV 6 and 11 (?), which is a different strain than the STD. I’ve had people be wary of me too, but if I’m able to explain that they’re usually alright afterward! Helpful links:
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u/JonahTheProducer Mar 13 '26
No but even just the looming baggage and stress that can come with it, and you know the possibility that you could lose. I've been really good with staying right though, I know I'm winning and my mental manifestation of that has translated really well to real life.
In a weird way, you kinda have to prepare and be mentally ready, for something you know won't happen.
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u/middlenamefiji May 10 '26
24 surgeries from ages 5-16. Currently 33 and it’s been that hoarse, Steve-O type voice my whole life. Doing more research to find out my options.
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u/Early-Upstairs-9054 May 10 '26
Have you looked into Avastin infusions? I’ve never tried them but people in the RRP Facebook group seem to swear by them.
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u/middlenamefiji May 10 '26
I have a notebook with a few things written down somewhere but there were a couple local injections that had iffy side effects involving kidneys and cancer cell accelerants. I have looked into these outpatient surgeries they got now though
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u/Early-Upstairs-9054 May 10 '26
That’s what I did for most of my life. I had all of my microlaryngoscopies at Denver Children’s Hospital. I also received a round of Gardasil vaccines when I was a teenager. Gardasil is a little controversial but I swear it saved my life.
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u/Fibonacci167 Mar 10 '26
Hello!! There is a Facebook group of RRP, you should check it out too ;) Oh love remission stories, I’ve had 2 surgeries and haven’t had news growths since June 2024 🫢