So I for one have got up today after my 1 hours sleep , full relapse of this shit in its 3rd week now. The tinnitus now sounds like one of those ear piercing screams let off by a 7 year old child in the playground, in my ears constantly…all day and all night.
I keep saying prayers to make all this stop …but for now Im suffering and its hard as always convincing my family and what friends I have left, of what Im going through.
I for one am sick of this shit.
I have completely had enough.
As @Greek agreed with me on one of my posts a few weeks back - its hard to make the medical and wider industries take awareness of this thing, when its not a recognised disease yet.
It needs to have a diagnostic test and to be accepted into medical literature before there’s any talk of a cure being addressed or even researched.
Till then we are always gonna be fobbed off with this idea that we are all nuts and “PFS is just in your mind, there’s nothing wrong with you” we hear all the time.
From all this crap like HIMS being advertised and introducing Finasteride on Facebook and YouTube to a HUGE new market of young men , alongside the fact that Finasteride can now be obtained from a simple pharmacy prescription as opposed to doctors, we are soon gonna receive a massive influx of new sufferers of this ‘mystery disease’.
In my opinion, the USA - where this drug was first patented and released will be the worst place to try and get these 2 things into motion. The fact that money funds Big Pharma who in turn lobby Congress in this circle of deception, has been going on for years and the fact that Propecia is a well known, highly publicised drug making them LOTS of money, it will be hard to break into and disrupt this circle.
I think we have better chances in Europe from the Medical Academia in Italy and France for example to get this fully recognised and into Medical literature.
However, to get this idea I have for awareness into motion, we WILL require a PFS sufferer from the United States.
We have some kind of agreement here that Finasteride has fucked with the Neurosteroids, particularly Allopregnanolone regulation and this is ‘possibly’ behind a lot of our symptoms. I think my symptoms are especially GABA related - Insomnia, Tinnitus, Anxiety, emptiness/Anhedonia etc
What we should do is this: Choose a United States based sufferer who is willing to have the Zulresso (Allopregnanolone Injection) and we create a PR Campaign to advertise it to the medical industry and to fund it by raising awareness and doing charity events, vlogs, football matches, TV appearances, Sponsored runs, Sponsored walks, Marathons whatever bollocks it needs to show the public and to get their awareness included in all of this.
We get the sanction and approval of several doctors to sponsor this - Irwig, Melcangi, Jacobs , SAGE Pharmaceuticals, SAGE Pharmaceuticals PR team whoever etc
We approach all people already who’ve been involved with Post Finasteride on a PR level like Kelly Pfaff, VICE, John Santmann , Paul Innes etc
The idea is to show the world with visual evidence that the new drug Zulresso is a potential remedy for a disease that needs to be accepted and this disease/syndrome is actually causing suffering to many, many men (and women) in front of most Doctors very eyes.
Alongside this we create a TV like documentary of us all coming together , starting the campaign, filming it from its initial inception on here, filming each waking moment leading up to the injection, the highs, the lows, the peaks and troughs that will sell it to a tv audience, the PFS sufferer having the injection will obviously be a big part of this and be willing to do Vlogs, monologues and have the injection actually filmed etc and the aftermath and conclusion etc
If we have a TV documentary of this the newspapers and media will naturally come to us - instead of us constantly chasing them.
Last time I checked Zulresso was $35,000 out of pocket for the injection.This is steep, some of it could be funded by donations on here between us but I think the majority could be raised from doing the charity events and drives I mentioned, and having it all filmed for TV will naturally create a wider circle of funding.
I know this post will probably receive a lot of critique, or members shooting it all down but I don’t care.
If you look on the forum we have argued on here for years about things staying the same, and nothing ever getting done…well here’s an idea to throw in the mix from me.
This could be potentially bring us all together under one project where we can all share out tasks and make a difference. It could actually be fun to do all this together and see the results, no matter what the results or the conclusions are.
If Allopregnanolone doesn’t cure the sufferer, then we are no worse off - how can you lose something you never had in the first place?
but if it succeeds then it will be a groundbreaking moment for all of us on here, some hope for this disease and our moment will be witnessed by a wide audience too.
Inspired by the words of Rambo from First Blood part 2…
“Finasteride, Im coming for YOU”