I’m new and i was wondering if there is anyone willing to chat.
I’m about to reach the 24yo mark and got severe, long lasting sides from accutane at only 17 and a half yo. So its been 6 and a half painful years with ups and downs regarding to sides.
I dont know, i feel so alone and unrelatable in my daily life, everything has gone wrong and i cant help feeling like a victim, a corpse left behind on the side of the road by the pharma
No man, we are finished. Nobody is even near finding a cure.
Please take comments like these above with a grain of salt.
Like Dr heally says, finding the root mechanism is like finding a needle in the haystack. The whole body has been affected but separating the root cause is like one in a billion.
Dude don’t be saying that shit and giving ppl false sense of no hope
Your claims are not even remotely true and if they were you have no proof at all
Keep it positive or don’t say anything
Don’t get snappy with me. I have a right to my opinion. https://rxisk.org/the-holy-grail-searching-for-a-cure-for-pssd/ relevant part being “This is like hunting for a needle in a haystack”
Hilarious, maybe being lied to about finasteride wasn’t enough for truth to matter.
Healy doesn’t have the necessary experience to have an informed opinion on this subject. I would put very little stock in his opinion. He’s also not a scientist and is constantly pursuing aimless lines of research.
SG’s broader point is entirely correct. This situation is hard enough as it is. People need hope. It serves no purpose to intentionally try to demoralise people.
Pssd victims want answers. The jumping on every new trivial populistic scientific Zeitgeist train passing by, is empty actionism and brings no answers. Only false hope is raised and money burned.
Exactly hence why these guys have no right to tell me Im giving them a false sense of no hope as they have no true sense of hope to give themselves.
There are two major scientific studies happening with the PFS Network that could give us very strong mechanistic clues about PFS and how to treat/cure it.
There are other independent studies being done by other organizations to understand the mechanism.
7 patients met with the FDA last week and shared their testimonials with a panel of almost 30 FDA representatives.
More patients are stepping up more than ever to publicly share their stories.
The PFS Network community was able to raise 130,000 euros in less than two months for the upcoming genome study.
Prominent social media influencers are bringing awareness to PFS.
Not sure where the hopelessness is, but I would ask yourself if your energy is best spent spreading that hopelessness you feel to others, or is it better spent donating, speaking out, writing a blog post, outreach, or the myriad of other things that many patients are currently doing to drive this issue forward.
Dude you make no sense just stop
@horrorshow: I’d just add that you have a right to your opinion but in a forum such as this for vulnerable men who have all been affected by this drug and others, you also have a responsibility to the community. Otherwise it just comes across as burn the house down venting i.e. I’ll express what I think and to fuck with everyone else. As others have said, there IS hope, none more so than now, and even if there wasn’t your post serves no purpose as all it does is have the potential to cause real life harm. Anyway, I can understand that mindset, but no one can say definitively that there is no hope even if you believe that to be the case. And the evidence so far suggests otherwise, in the wider sense of the great leaps that science is making in various fields, but also more directly in the amazing work that has been done so far by both the foundation and the network. We can’t say anything for certain until we know all the facts, and even then if the situation doesn’t appear to offer immediate solutions, no one can write anyone off as the answers could very well be just around the corner with more study and continued advances.
I dont know why everyone is mad at me. Given enough time it could be possible for any disease to be cured, but if you look at the history of disease most people succumb to it before any cure or treatment becomes available. Im gen x so maybe its a age thing, or internet culture thing, who knows. Anyways I can see that my way of speaking isnt appreciated so whatever.
Hey I appreciate a good rant, I’m sure others do too. PFS is a shit-show and everyone deals in their own way. How are you gen x, aren’t you like 29?
I think Healy is a psychiatrist and not really interested in solving PSSD per se. He seems more like a teacher following his students newest ideas about the conditions (like sfn). As it comes to this condition what we have going for ourselves that this condition was caused by a ‘safe’ medication that was used for cosmetic reasons causing the most inhumane condition and some affected just cannot accept this state of affairs (plus the doctor gaslighting). Also to solve this we need the best of the best researchers, not somebody supervising class like projects.
Also I’d say taking this drug down or adding big warning label about every sideeffect would be very important. If we could show with Tampere genetic study that some people WILL be affected by persistent maladies the warnings would be added and doctors would slow down with prescriptions hopefully. Also this could mean good news for the affected.