Hi guys,
I don’t know if anyone has ever started a thread like this, and since I’m relatively new to PFS (3 and a half months in, worst 3 and a half months of my life), I’ll just go for it. I was thinking about a few things today, about why we have to suffer through such a horrendous illness (let’s face it, it is a disease, as nobody knows how to fix it, and it attacks our health), and why so many people still either choose to ignore it, are uneducated about it or actually think this is all in our heads. There’s a few things working against us, if we ever want to find a cure for PFS, and I was wondering for a little while - imagine if somebody in a position of power, wealth or fame decided to take propecia, and ended up in the same boat as us. How much more attention would be paid to finding a cure or a truly effective treatment for symptoms then? A few factors working against us
- nobody in a prominent position is going through this, and despite a fleeting interest from mainstream media which seems to have faded, there is no widespread acceptance of PFS as an illness. heck - even a majority of the medical community seem to think this is make believe, or that the number of people suffering is much lower than it is.
- we’re working against a multi-billion dollar pharma, who has a vested interest in making sure their product stays on the market, and seems disinterested in either working towards shutting down production, performing more closely controlled and extended trials, updating awareness and warnings for the potential life-changing damage their drug can do, or investing money into research for a cure or effective treatment, which ultimately they are responsible for. bringing me to my next point
- there will always be a stigma that we have brought this upon ourselves, therefore we are effectively on our own. it is my belief that while this is true to a point, we were led to believe that such a small population of people suffer from irreversible side effects, and it is so uncommon it has the same percentage chance of being hit directly by lightning (or something to that effect, you get my point). i think a lot of finasteride users were aware of the side effects and ‘rolled the dice’, so to speak. but then there’s people like me, who were prescribed the drug with NOT A SINGLE WARNING from their GP, and took the drug before even knowing about possible side effects. I wasn’t even aware of ANY significant side effects, let alone irreversible ones, before starting to feel ‘off’, and googling for side effects. regardless, it comes down to gross negligence by both Merck, and the FDA for producing a drug that can change somebody’s life for the much, much worse. if there was even a whiff of anything like this in their trials, the drug should have been shut down and never heard of again. it is a sad world we live in, where a group of people’s health - albeit a small group - is heavily outweighed by the profit margins and ‘hush hush’ nature of big pharma.
and finally
- nobody has a clue why we specifically are effected like this, and the population of people affected is so small in comparison to people with cancers, for instance, that the money needed to truly and effectively research a cure will sadly, probably never become available, unless Merck decide to become decent human beings and help, or a court rules to that effect.
what we need is a proactive and prolonged media campaign, combined with multiple lawsuits and awareness raising within both the general medicine and research fields, to bring some kind of effective solution here. who knows how that could even happen, but there seems to be some bright dudes on here - despite our good friend brain fog - and collectively we should be able to brainstorm some ideas for all of the points raised above. if anyone wants to add to this thread - what is needed, what could be done, or anything - please feel free. we are some desperate individuals, and desperate individuals work well together (see, spartans, soviet resistance WWII).
at the moment though, it looks like we’re left to our own devices, and for someone with a very language friendly and non-scientific brain, i don’t even know where to begin.
thought it might be an interesting idea to see what we could come up with.