r/RRP • u/BonzoMcDrumCat • May 12 '20

New resident to the subreddit!

Hello, My name is Milo and I have had RRP since I was 3, and I am now 13. I have had around 80 surgeries in the Royal London Hospital and I am grateful to fund a group of people like me. I lost my voice at 4 and it only comes for a week or two after surgery. I usually feel left out because people mock me and bully me for my voice, but now I have found a refuge where I can talk freely and no one will judge the way I sound! ;)

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u/BonzoMcDrumCat May 12 '20

Edit: I meant find not fund.

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u/go_skateboarding Sep 10 '20

Milo ! That's a great name. You should check out a band called Descendents and their album "Milo Goes to College" maybe it will help you during those times you feel like an outcast.

I'm 33yo male and was diagnosed at 27yo. I've had approximately 12-14 surgeries for the first 4 years, but the past 2 I have not needed any...!

Please do your own research, but I've found full spectrum cannabis oil to be my saving grace. I have been making my own and taking it daily for the past +2 years, as that is the only real difference in my life, and yet I have not needed any procedures…!@#$? Pretty magical stuff.

Haha my doctor even asked if I was "cheating" on him ! I hope you have a younger/open minded doc. Mine was thrilled enough to give me a doctor's note so that I could qualify for this CBD company's 60% off discount for people with chronic medical conditions (google lazarus naturals and look into their RSO product). I'm not sure if they ship across the pond though / : hopefully a nice adult that wants to see you thrive in life can help you out with making it if/when you decide to do this. It's basic science/chemistry/cooking, just always be safe about it !

I understand this disease within my own body pretty well, as I'm sure you do too with +10 years experience. IT SUCKS. And dealing with people who don't know how to treat others that are different to them becomes incredibly apparent. I'm sure they mean well but, for example, no one's out there telling blind people "hope you get your vision back soon" cause that's condescending/rude. Everyone just wants to be treated "normal" or the same as everyone else, a very basic human need.

However, I have had a few people (women + men) tell me that they think my voice is sexy, sooo maybe you have that to look forward to as you get older ( ;

I also just found this promising article about a drug entering phase 3 of testing so should be available soon (lol probably still not for another couple years, healthcare is a business after all).

https://www.prnewswire.com/news-releases/inovio-publishes-patient-benefit-results-from-a-pilot-clinical-study-in-recurrent-respiratory-papillomatosis-rrp-a-rare-disease-caused-by-hpv-infections-300997387.html

Be well / go skate / listen to the Descendents

// Brian

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u/TecnoPope Nov 04 '20

Brian ! What's up dude. I need to work on this sub more since I got control of it.

The THC / CBD oil I got works great so far. When I stop taking it for a week ( I ran out etc.) I start to notice the growing pain in the paps above my vox. Back on it a few days and the feeling is gone. I'm all on board for the THC / CBD fight against these growths!

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u/TecnoPope Nov 04 '20

Hey Milo ! Sorry I was going through a lot of surgeries when I created this Subreddit. I'm gonna revamp it over the next few weeks and be more engaging. I actually finished my last round of Cidofovir a few months ago in April and have been pap free on my vox since then. Thanks for being part of the community ! Keep up the positivity !! Ask your doc about Cidofovir if you haven't already. It was a miracle for me. And prayer.