If finasteride becomes obsolete I wonder if that would be good or bad for us…
Unequivocally bad.
The less people with PFS, the lower the interest in our condition.
So anybody out there fighting to get this shit out of the market should realize that it would most likely be a death sentence for us.
I largely agree with what you’re saying. But I think we have enough patients to be able to get out of this. It just comes down to more people getting involved. For example, right now there are only 200 people actively contributing to research. At least 5 of those 200 are my friends and family. And we only have about a dozen patients who have gone public talking about this disease. We have 7,000 registered members here.
It’s a worst case scenario for PFS sufferers. The sense of moral outrage will diminish, and there will be less attention directed at the cause, since the number of people with PFS will be smaller. The patient group will also be older and less energetic. Parents of patients will be dead. Research will stagnate.
It’s imperative that we understand the mechanism of the condition before an improved hairloss treatment comes to market.
That’s quite a grim prognosis. I think as things stand we have enough patients now to get where we need to go. The problem is such a small fraction of the patient population is doing anything. For instance, only a dozen or so patients have spoken publicly, and only just over 200 people are actively donating. Of those 200 people, at least 6 are friends and family of mine. I think there are 7,000 registered members on this forum. I’m more worried about the apathy and weird mentality exhibited by the overwhelming majority of our community… I’ve tried to politely ask other patients to get involved and to do something and so often I’m treated as if I’m asking them to support a cause or initiative they despise. Or that I’m asking for some sort of unreasonable favour.
This is still very basic research. Notice the careful wording how it „could“ lead to hair loss treatment in future. New treatments based on this are likely far away. When I frequented hair loss forums in the early 2000s, „the cure“ for hair loss was always just five years away. However, the fundamental treatment options have not really changed since then.
Based on that I wouldn’t worry about the potential impact on our community. Also remember that our condition is likely not limited to Finasteride. Once this is established once and for all, alternative hair loss treatments do not matter.
My view is irrespective of whether fintrash becomes obsolete or not, the people who are currently suffering from this should simply do more to get ourselves out of this situation. Rather than implicitly hoping that more people end up in this inhumane torture chamber. I think it’s incredibly sad that as a community we tacitly wish for more people to end up here, just because the overwhelming majority of current sufferers can’t be bothered to lift a finger.
I’ve spoken to numerous people who work full time and have suffered from this condition for years to see whether they’d be willing to speak publicly, join our monthly donation group, or do anything at all to move this issue forward. They often either ignore me or get angry. It’s truly pathetic, short sighted, illogical and incomprehensible. They do however have money for an endless supply of HCG and other bullshit.
If every registered member contributed a measly 20 bucks per month we’d have 1.6 million per annum for research. If 1000 patients could simply have the courage to go public, our issue would look like an indisputable health crisis. I really can’t fathom what legitimate excuse a person could have for not being able to spare 20 per month.
I don’t disagree with any of that. I was merely pointing out that this research has little impact on us and shouldn’t lead to despair. It doesn’t change anything. It is all in our hands and whether we do enough. As you point out, we could do more.
Never going to happen, I’m sorry.
And regardless of how many people complain, if you don’t have researchers there’s nothing you can do.
You can’t just complain your way out of a disease.
Anyway, baldness has been “a couple of years away from being solved” forever, literally centuries, ever since somebody noticed eunuchs didn’t go bald.
Maybe Fin will stay on the market for another 50 years. Maybe it’ll be banned tomorrow.
But if I had to take a guess, I’d say the next drug after Fin will be probably 99% identical to Finasteride, with same sides and new victims.
We have excellent researchers. All people need to do is donate and speak out about this condition. If we collectively did that we would be on our way out of here.
I agree, and also if fin becomes obsolete there would be less monetary incentive to deny it’s negative effects which could actually be useful for us.
Either way, we just need to focus on raising awareness, organisaing the community and looking for donations. Everything else is out of our control.
I’m sorry, I completely misread your message.
I agree with you.
Do you have any faith at all in the current project? Or do you think researchers should be doing a different project.
I’ve read the literature review Axo and Awor put together and I think it’s the most compelling and logical theory for this condition, backed up by some real hard evidence provided by Baylor. I think the scientists they spent 2.5 years finding are our single greatest hope for getting out of this.
In short, I do have a lot of faith in the current project.
Good, I hope the sample collection goes smoothly.
I mean it’s good to have faith but look at the forum 2013/14 and the amount of hope that was invested in Baylor and Harvard and nothing came of it. I suspect this will be better but don’t get your hopes up.
Baylor at least pointed us in a certain direction and provided us with insight into this condition. What other hope do we have? Ideally we’d wake up a month from now and the 7,000 some registered members of this site would be contributing to research, messaging journalists and philanthropists, speaking out on YouTube etc. Then we could actually get out of this quickly. But alas, that’s asking too much of people apparently.
If you had faith in the project you’d say ideally we get good samples collected, they support Baylors findings, and the researchers are able to use them to determine what drives the changes found. Instead you’re idealizing an imagined outcome to an imagined other project.