Some of the moderators have recently formed a content team for our social media outreach projects. Youtube content is in the planning stage, and we would like to use the platform to help those who are interested in telling their stories share how PFS has affected their lives. Please give thought to any implications with regards to your own privacy, and don’t feel pressured to contribute. This is purely voluntary, and as the benefit of this project is to humanise the problem and bring it out of the shadows, a bag over the head isn’t going to be of much benefit in this medium. There will be other ways to contribute to our projects.
We hope this project can broaden awareness of the truth and the scope of this crucial public health issue - a problem that is too easily buried due to stigma, clinical ignorance and the powerlessness of isolation. Sharing stories together will allow patients voices to be heard in a coherent way and focus attention on the real human cost, as everyone affected is a valuable person.
@Jaime is taking a lead on this project, along with @Dubya_B, @Greek and @pete., For now we’re just registering interest while things are worked out. Please let us know in this topic (or by pm to one of the moderators listed above) if that’s you. You will be contacted to discuss this further in time when plans for the project are further along.
Thanks and best
Yes I am interested in doing this.
I would be interested, still obviously for privacy reasons, I think the podcast format was interesting because you could use a pseudo if you wanted.
Some might rant but I am still working for the moment and wish to keep as little people in the secret of my ordeal…
But I am ready to share my story should my privacy guaranteed…
This probably isn’t the correct project for you then.
One thing we need to do is focus on one thing at a time and complete each project before we move on to the next.
We have been working on the ideas for this YouTube project for a while and this will be the focus for now.
Ok, I hope it will be ok for the moment… Not that I do not want to take part or anything… Plus I am early in the process and some people living with for longer may give a better picture.
It wouldn’t be possible to share your story with your face blurred or something?
I dunno… Again I am not against the idea. If someone can fix this I can maybe think about it.
I don’t think that’s what we’re looking for.
We think that if people are prepared to tell their stories the power comes from putting a human face on the situation.
We have plenty of stories without faces and voices, if we’re going to make a difference with these videos, we think it means putting faces out there.
I’m PSSD guy, I hope I can partecipate
I would be interested in doing this.
Thank you to all of you who are offering to take part in this. I have thought about showing my face and telling my story in the past, especially when I was interviewed in the documentary about PFS, but I finally asked to do the interview showing only the back of my head. As of today, I don’t feel capable of showing my face while telling all my PFS story, so I want to thank all of you who are willing to do this.
Many of you have expressed interest in creating a video telling the world your story. If you’re interested in creating such a video, please reach out to me. I’ll message you the details of what the project entails from there.
Broadly speaking, we’re looking for guys to go on camera and tell the world their story with PFS, PSSD, PAS, or any other drug on this website that has caused the classic “PFS” symptoms. The story you would tell is much like a member story on here. Our goal is to bring attention to this problem we are all facing, but by showing the real person behind the keyboard that is effected. A video shows your face, voice, and emotions, which are far more powerful than text.
Please let me know if you’re interested in coming forward.
Be strong and keep going forward in the fight towards finding the cause and cure to PFS, everyone.
More warnings will decrease the likelihood of a cure not increase it. Should be obvious. It’s an honorable thing to do, but don’t tell me that it increases the likelihood of a cure.
Fantastic idea- if my face wasn’t messed up from this I’d 100% help you out man I’m just too self conscious right now, I won’t even look in a mirror.
I actually believe a professional documentary on finasteride with victims, families of those passed away from suffering and doctors who will speak out against finasteride would help us out more so than anything we can do right now it would put pressure on merck and co as reputation and stock price comes under threat. A documentary would destroy the drugs credibily while a mass scare would ensue from people already taking it as would those who never connected their symptoms to finasteride. I’d expect thousands registering on this site and interested medical institutions who would start their own research on it.
I would absolutely donate if someone was putting a doc together that was good enough for Netflix.
Sorry, how did you come to this conclusion?
Are you talking about government warnings/black label warnings on the bottles of finasteride? I think those kinds of warnings would trigger further research into the condition.
Doing nothing won’t get us anywhere, that’s for sure.
I’m game for it. Let me know.
A lot more patients are sharing their stories on YouTube now. We think this is an important project and we look forward to seeing some new videos!