That’s what the PFS Foundation is trying to do. That’s what we here in this forum are trying to do. Unfortunately, it is not easy and that’s why we need everyone’s help.
There are several ways everyone can help:
Report your side effects to the authorities. This is an easy way to create awareness in the medical community and has lead to far more severe warnings on leaflets and handouts to medical professionals. With the current Information with regard to side effects on Propecia leaflets, there is no way I would have taken this poison. Too bad, these warnings weren’t there 15 years ago. See here for more Information on how to report your side effects: https://www.pfsfoundation.org/report-side-effects/
Complete the survey. For the first time ever, we will systematically generate data with regard to the numerous side effects of this condition and their Impact on quality of life. It will likely also show the unsurprising similarity in symptoms between PFS, PSSD, PAS etc. that have so far been considered as separate conditions, but are likely based in similar if not identical mechanisms. The survey will hopefully create awareness and leads for publications and research. And it only costs abount an hour of everyone’s time to complete it. See here for more details: Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate
Provide 23andme data. This is a DNA test. We hope to compile as many samples as possible of DNA from PFS, PSSD, PAS etc. patients. This may generate leads with regard to our genetic predisposition that makes us suspectible to suffer from persistent side effects after the use of these meds. This would be of high scientific interest. It costs only about a 100 bucks to order the test. See here for more Information: Important Announcement: Two Community-Led Research Projects - Please Participate
There are three things everyone can easily help with. They cost comparatively little time and money, but may generate more awareness and generate scientific leads. The latter two points may help to establish that PFS, PSSD, PAS etc. are all the same Thing which would be huge and make our problem much more relevant and thus may provide much more interest from the scientific community and attract more funds.
I also want to use the opportunity to express my condolences to Zadig’s family. It’s a shame that another young life was wasted and another family is mourning. It was clear from his posts that he was desperate, yet I was hoping that his suicide threats were just another part of his rather brash harsh way to express himself. It wasn’t. He was serious.
It is in all our duty to do our best to stop the suicides and stop the suffering. Let’s do all we can do to advance research in and awareness of this condition, so that one day these suicides stop and we leave this mess behind us!