Hello all, I’m looking for someone who’s been here a while… in all honesty, are we gaining momentum in comparison to years ago? Do we seem to be getting anywhere? Are we in the same spot as 10 years ago? Is there another Italian study in the makings like the last one? Just feeling stressed out
Yes, we are making progress. In the last ten years, warnings on leaflets were increased in many countries, major media outlets had reports about our condition, the PFS Foundation was created, a scientific network was established and studies were initiated. Today, we have a theory that explains the foundation of our problem and which is investigated by scientists. The results so far indicate that we are on the right track.
Unfortunately, things are moving slowly, though. Partly that’s just the nature of the game. Science takes time. We, as a community, however, have also not done a good job at times. Only a small minority actively supports the research efforts. Too few people donate, participate in studies, create awareness or participate in community projects. The community has to step up.
There three things almost everyone can do: set up a monthly donation to the PFS Foundation, file adverse effects reports to your medical supervisory agency and contribute your 23&me data to the community project. There is really no excuse not to contribute. Otherwise we will never solve this problem.
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I couldn’t have said it any better. Well done.
Yes, nicely put @Northern_Star. I might add that around 40 papers have been published in the past 10 years on the Post-Finasteride Syndrome. When I got PFS in 2007, there were none. Recently, first papers are starting to pick up on the similarity between PFS and PSSD for example. This view needs to be expanded drastically, though (to include Accutane, Lupron, etc.). That is why @axolotl and I are working on this:
From a community point of view, we need to start boarding the Lupron Victim folks (both men and women), and fully on-board the Accutane sufferers (also both men and women). Hopefully, more PSSD people will join as well. Already now, we are all talking about the same things, just in different places. If we can unite here in one place, we will massively improve the visibility of our problem. That in turn is important to help generate further scientific interest.
So to answer your question: Yes, we have achieved a lot, probably more than other related communities. But there is still a much to do. Luckily, we have a great community and great people working for this problem.
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