Hey @Dknighten,
As it happens we have just secured several of the propeciahelp socials and are discussing plans currently to increase activity and content on these. @Greek has made a good start and we recently promoted @Jaime to moderator to be directly involved with this direction. There is sadly an added challenge with this issue in that the disease is about as stigmatising as one could possibly imagine - often comprising sexual and/or mental illness - and men typically dont want to be identified. As a journalist told me recently, anonymity goes over very poorly. Human’s connect with human stories. When they can relate and even like the person. Conversely, we can see that a late member of ours, Matt, by sharing his story on imgur generated nearly two hundred thousand views. It’s very clear to me when the human aspect is shared by a personal story of the lasting effect Fin/accutane/ssri has had on someone’s life and the human being they were and what happened to them (not hawking some cure or something), this can drive awareness in a very positive way. One aim of our socials will be to connect with those with PFS, and hopefully patients who may not be aware of our projects - or maybe what is wrong with them at all. Many members have had long term health problems after the use of these substances and simply never had an answer as to why. A few have told me the info on this site was the first time they connected the dots. Given that these endocrine disrupting drugs cause health problems that don’t always include the ones in the headlines (sexual dysfunction and depression) and don’t make ostensible “common sense”, you can bet there’s many more out there unaware of why their health changed at a certain point in their life.
It’s a good idea. Please contact @Dubya_B, @Jaime or @Greek about this if you are willing. They are currently planning content for our revitalised youtube channel. A big aim for this is to get content there focusing on human stories. The more we can add, I hope the more it will encourage.
We aim to run this operation as professionally as possible, and as such need to prioritise our existing (and in the next phase of our projects, new) relationships with scientists on the cutting edge of endocrine and epigenetic understanding. We also have our close relationship with the foundation to consider. While users can freely share what they feel helped them according to the guidelines, our efforts since the relaunch of the site and all our projects, and @Awor’s for longer, has been to get this issue recognised as the serious medical issue it is and away from connotation with the alternative health sphere. Such associations to our site and projects would negatively impact our ability to reach out and take the issue forward via our planned practical steps.
Thanks guys. Feel free to chip in on ideas for what kind of content could go on an insta - maybe @Jaime can keep an eye on this thread.
