alt Hacker NewsThis is the most supremely motivating post I've seen in a long time. I know what it is to be diagnosed with cancer, being rushed to surgery - it's amazing how quickly the medical-industrial complex can move once you've got a diagnosis (at least in Australia). I had a short period of contemplating terminally, because cancer claimed the life of most of my family. Thankfully, after surgery it was gone.
To see Sid use his motivation and resources to solve his own problem is the core message (IMHO) of the hacker community.
It makes me look at my own problem (Peyronies) in a different light; a disease which has affected my life in ways which cannot be overstated. Yet, all the money in the world right now can't fix Peyronies - yet in reading his journey my mind has been changed about this.
His slide title: "I'll talk to anyone, I'll go anywhere, and I can be there anytime" is certainly the mindset!
Thanks for posting this - I'm inspired to take similar action for Peyronie's. Anything is possible.
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I commend you for speaking openly about Peyronie's, I imagine that isn't always an easy thing to do (or to deal with). Best of luck, and I hope you manage to make progress with it. Effective treatment wouldn't get as much airtime as effectice cancer treatments, but it would certainly have a positive effect on the lives of millions of men.
Given your personal experience, I expect you know significantly more than I do, but I just wanted to note: about 20 years ago, I was part of a small company that filmed and edited educational, medical videos for various clients. One of the main things we filmed for a while were Peyronies repair surgeries. They were using a product called Surgisis from Cook Medical as a tissue scaffold to straighten things out. It looks like, sometime in the past 20 years, Cook may have moved on to a new product called Biodesign: https://www.cookmedical.com/surgery/the-path-from-surgisis-t..., but I don't know anything about that.
You may know all of this already, and it may not be relevant to your situation at all, but in the slim hope that my experience of editing scores of Peyronies surgery videos may help nudge you in a new or helpful direction: there you have it!
Several years ago I was doing advertising websites, one of our customers was (Pfizer? Bayer? both were customers) they had developed a drug against Dupuytren's contracture[1] and apparently found it effective enough against Peyronie's that we were asked to create a website describing this (possibly off label) use of that drug.
Honestly I have no idea if it was effective or not, nor do I know anything about the side effects, but just in case you were unaware of that particular option I want to put it out there.
From what I can find, doing an online search along that path it might have been Xiaflex/Xiapex by Pfizer.
(Not paid by anyone in this particular business anymore, just remembered it when I read your comment).
Fellow Australian with Peyronie's here. Do you know about Dr C Love? I have just had a PIG surgery with him. It is too early to make a definite statement on the result yet, but things are looking a lot better than before.
Thanks for you kinds words, glad to hear you recovered from Peyronies.
"Anything is possible," is the correct mindset when it comes to chronic or incurable diseases.
I am watching DTF St. Louis (which is not a terrible reality show about a third tier city like the title implies, actually a Jason Bateman kind of dark comedy/whodunit), and Peyronie's features in the story. The show also has the first commercials I've ever seen for a Peyronie's treatment, and apparently it's an official ad partner of the show. I wonder if some enterprising show exec decided to go pitch the perfect sponsorship or if the company making a treatment commissioned a show...