I wasn’t going to share this here as I want to keep it centralised to my friends and family but I made a video while I was in hospital recently something that really scared me after visiting a guys Facebook who died from PFS was that people didn’t understand what happened to him or mostly likely put it down to just depression. I won’t leave this world in silence without people knowing what happened to me, I can’t and I won’t, this is why they are allowed to get away with this. I tagged the leading researcher on the Baylor study and I don’t care what reaction it gets here especially when my life is concerned and others who have sadly passed away, it’s went on for far too long and men are dying we need answers.
That was absolutely heart wrenching to watch. You are showing such incredible courage, both in fighting this disease every day and in sharing your experience with the world. Please keep up that fight. Your family need you, your friends need you and we here all need each other.
4 Likes
Don’t feel bad for tagging any doctors they actually do owe an explanation as of to why the study hasn’t been published because they took $100,000 from the foundation and an additional $2000 per patient that was part of the study they better have the answers! It should never take 7 years for a study like this 2-3 yeah that’s understandable but not this long! Sucks to see you in this state man, I hope we can all beat this some day. It’s truly mind blowing what this does.
1 Like
I think you are amazing for sharing your story and glad to see you have fight still left in you to get those responsible brought to justice. My brother is a fellow sufferer. My heart goes out to all of you and I hope you get justice and more importantly cured
2 Likes
Thanks mate I consider you a friend.
1 Like
What happened to the video? I cant open the link
Me neither
The video is just there for me 
1 Like