YouTube project its importance

Hello Guys,

I am one of the many who gets frustrated with
the lack of knowledge and understanding of our suffering outside of the forum. .To support the project request I submitted a video back in May. It goes without saying that the the higher number of personal accounts = the greater our chance of people taking notice. As far as I’m aware there hasn’t been much take up. Please take some time out to do this if you can, you can remain anonymous. There is often lots of noise about us not moving forward from this dark place. I believe the first step always had to be to raise public awareness. While PFS isn’t across the world news as I’d like I feel this is at least a good start. Lots of people view social media. Numbers add credibility. Please STEP UP lads and do your bit… I used my phone and it took a few attempts but I got there. Let get behind this instead of stagnating on here.

My approach was a simple intro, who I was before, sides, effect in my life, and a plea for help to get the drug banned.

Cheers guys.

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Highly agree, I think flooding the media is the best chance we have. Have been planning to do this for awhile, just so tired.

Can I get the link for your video?

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@basementdweller good man. It did take me 3 days tbh I had to keep returning to it due to this disease. Prior to which I could have done it in half an hour. My vid is now with the admin team message @Tzinkman. Please push forward and do one it doesn’t need to be war and peace :heartbeat:


what’s the plan with sending it to the admins? Are they putting it on a channel or something? I was just going to upload it onto youtube


@basementdweller they plan to do it in a co ordinated way rather than people doing them sporadically and individually. @Tzinkman can explain the strategy I’m sure. But please don’t give up. We need to do this and get as many onboard.

The plan is to feature a collection of patient videos on Youtube.

I believe @Tzinkman and @greek have been taking a lead on the project and sending either of them a PM to let them know you are interested in participating would be a first step.

Thanks for considering being a part of this.

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@basementdweller thanks mate this may make a difference even if it stops someone else from taking it!!! Or we may start to get noticed

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problem… I have PFS but it was triggered by azelaic acid not fin.