Is pfs so rare? Only 15.000 reported cases worldwide? Are we all here already reported cases?

General Discussion
#21

I’m not sure what the point of this discussion is.

In 2018 there was over 8 million prescriptions for Finasteride in the U.S if even 1% of those got PFS that figure would hit hundreds of thousands if the drug has been on the market since the 90’s.

Total prescriptions do not represent individual prescriptions. According to this site, there were 2.8 million men approx in the US who took the drug in 2018. We also know that the onset of PFS is highly variable - some take the drug for 10 years, others for 10 days - so you cannot simply apply a percentage figure and attempt to model the total population who develop PFS. There may be a high number of dropouts who stop taking the drug for other reasons, before they develop PFS. Who knows. Also, why do people even assume that we’re talking about 1%? It is entirely possible that PFS occurs in less than 1%.

If there are somehow hundreds of thousands of PFS patients globally, how do you all propose we get them involved in our community? How would these people know about PFS, unless there was some sort of front-page special or nightly news broadcast that went out globally? How would that improve our prospects of understanding or eventually, treatments, in the short to intermediate term?

We’ve had a hard enough time getting 7000 patients registered on various online forums over the years to contribute to anything remotely coherent that advances scientific understanding, and less than 5% of total donations to the PFSF came from patients. We still can’t even get more than 300ish patients to complete a simple survey. We need to accept the fact we are a small community and that we need to work together if we’re any chance of ever making it out.

The admin team/PFS Network have been banging on about small, productive actions for a while now. Most of you have completed the survey, which is awesome. Ryan, you have spoken publicly which is 10x awesome. But there are patients in this very thread who haven’t even reported their symptoms to a regulator. If this disease continues to go underreported, anyone looking at this problem will of course be dismissive and label it as extremely rare.

Further to my question of “how do we reach the hundreds of thousands of patients”, speaking publicly is a fantastic way to increase exposure with highly shareable content that attracts interest from mainstream media, which may eventually lead to increasing the size of our community. Our Family Advocacy Group, which now has over a dozen members and will launch later this year, is another way for patients to get involved.

I could go on and on. Talking about how many patients are out there is pointless - let’s start small.

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#22

How many pSSRI victims sitting in psychiatric units total disconnected from all. How many victims are not informed over the world, thats pfs foundation an PH is fighting for them.

And the movement is splitted into much subgroups on bodybuilding, acne, Facebook, reddit…a further dozen was told to me…

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#23

I will do that the next days.

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#24

If we ran fb ads to all finasteride users I’m sure we would have a huge surge of new sufferers registering. Also as I said this forum should be renamed, not even post finasteride syndrom is good name. It should be called finasteride side effects with Google ads running so whenever someone Googles “finasteride side effects” or finasteride ed/sexual dysfunction, our forum is first what is offered. And Google ads charge by clicks! If this means we get more registrations or even better if this means it may save someones life from being completely destroyed, for 50 cents a click, I’ll be the first to donate every month for this cause!

Currently when I Google fin side effects all I see is payed merck articles asurring us how side effect don’t exist or are very mild and disappear upon cessation, which is one big fat lie.

Propecia help name is really not helping and is probably big reason there is only 7k registered in so many years… I think only suicides from these drugs surpass 15000

#25

I started this discussion only as brainstorming how to get all the pfs, pSSRI and pas victims united in one big forum. If we stay as multiple little communities Merck and pharma generica producers and lifestyle resellers are happy.

After all the pfs foundation and pfs network make a great job to get this rare disease known worldwide. Initiated great research and us engaged with heart and soul…

@Sugarhouse It should be just a discussion, no criticism on the great work you and the foundation do. Website is allready in Chinese, Hindi, Russian, Espanol to reach the entire world. YouTube presence performes stunning!

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#26

No offense taken, you’re free to discuss, I’m just trying to provide some perspective.

My opinion is that given the current state of this disease, the lack of scientific understanding, and the way we’re organised as more of an alternative health community than a rare disease patient community, it really does not matter if we have 5000, 50,000 or 500,000 patients. Attracting more patients only amplifies some of the existing problems with direction.

Once we’ve established PFS as a rare disease and scientific understanding is advanced, sure, it would be helpful.

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#27

If people know our suffering as lobotomized there will be more big donators for more research and departments in cure hospitals special for people with rare diseases. Where you can meet and talk to other sufferes. In all big university hospitals they have a Department for rare diseases already.

And we need local support groups for rare diseases, where enough people with different rare conditions can support each other. If I get out of carthasis I swere myself I will start this project over the local board of support groups.

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#28

And these 15000 that the foundation states, (not the 7000 registered) where do they come from?

#29

Always, always, always ask “what can I do?”

Not

“what can be done if…?”

Or

“Why doesn’t somebody else…?”

I share @Sugarhouse’s take. Start small. Focus on what you can achieve and the big stuff will follow.

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#30

Do you honestly believe that we’re just a subset of extremely rare individuals that have these super rare genes that make us more susceptible? C’mon man think about the mechanisms that are affected by taking this drug. Finasteride is poison, it’s literally designed to be an endocrine disrupter, the very thing scientists have been warning about since the 1960’s. There’s no way that there wouldn’t be hundreds of thousands with PFS. I spoke to a women who only took 2 pills and had all types of health issues, how could anyone conceive of taking a singe pill and ending up with a myriad of debilitating health issues but that’s the reality when a finely tuned endocrine system is exposed to a bomb like finasteride. I’m of a different opinion I think this comes down to a numbers game.

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#31

I was thinking that a name change to ‘post endocrine disruption’ to facilitate all drug classes might help our cause when there isn’t a name of a drug attached to the syndrome. Scientists may be more forthcoming.

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#32

I think there is no point speculating on how many people have it and haven’t registered on this website. If there are a lot of people, and anyone on this thread thinks that bringing them to this community would significantly advance this issue, then feel free to reach out to me about how you would like to go about this. That could be useful. Otherwise, this discussion is just a waste of time.

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#33

It’s a fruitless discussion. Maybe?! But 1,5 Mio clicks and 500.000 unique users on pfs website gives our movement power! That gives me the power not to be the forgotten one. I’ve lost my love, my sex and lost my pride, like so many others here, but there us a movement behind us.

Only 1700 on pssri forum, only 6255 at propetia help, don’t forget ten thousands of men are so ashamed to be connected to sexual problems, that they never register, only lurkers. There are many other users on many different forums. Old men with bpe don’t know anything about pfs. urologists and psychatrists never heard about pfs and pssri So multiple cases are not diagnosed.

15.000 documented pfs cases. Over 17.000 registrated cases of sideeffects.

Don’t minimize that’s what the Merck and pharma … want. They share a shit over 6255 lobotomized and castrated, but not over 1,5 Million views to the foundation.

The dirty ironic is as longer this shit is on the market as better for the sufferers. But what about the damaged childs from psychodrugs and isotretinoin…and the stolen lives of 20 year old boys…

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#34

This all just ends up being “how to spread our message further”

Nobody is opposed to that.

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#35

It’s the same as the 101 recovery protocol. You can say all tried 100 times in 15 years. All useless for recovery. One is beaten hard with no chance of recovery, one is a moderate case and able to stabilize on a 90% baseline. So or so.

Or is there a positive effect in healthy lifestyle, psychological stability…

someone is recoverd

and gives hope and

motivation…

We dont wish people pfs, but we want them to register all, to get more power…
more awareness,
more fundraising,
more research

#36

I hate to repeat myself but nobody is going to google propeciahelp or solvepfs. I bet there are many famous and rich people aswell with this problem willing to donate but never even found this forum or pfs foundation. So one of my suggestions is to change domain and name of the forum to finasteride side effects forum or something similar.

Other suggestion is to run Google ads for it so anyone who Googles fin sides will be brought here or to foundation website, not to websites which claim side effects don’t exist. I think we need much, much more than 7k members before we are taken seriously. Millions of people use fin and only 7k of us are complaining, of course they think we’re loonies. And I bet 1 of 10 who used it got sides and probably even more than that, its poison after all

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#37

@Dela It’s an important advice! The best websites must be found! Tell it to the staff. We all sit in the same boat. We all want awareness for our suffering and fundraising for more research. If you don’t break the rules discussion is free. Make a new topic of this.

#38

We’ve had a hard enough time getting 7000 patients registered on various online forums over the years to contribute to anything remotely coherent that advances scientific understanding, and less than 5% of total donations to the PFSF came from patients.

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This is shocking to me. Who the heck else is donating to PFSF other than patients themselves to the amount of 95% of donations. The majority of people I tell don’t even believe it’s real. It’s hard to get them to even watch the youtube videos and add a comment. The only way this disease is going to be legitimized is when it is accepted by the medical community. Then we can get more donations and grants even. Hopefully litigation that would amount to a financial payout by big pharma to further our efforts to finding a cure. You are 100% right that we need everybody to pull together, fill out the survery, report their symptoms to their regulatory health authority and speak publicly on camera. Awareness is the first step which will hopefully provide the means to finance enough research to prove PFS is real beyond any doubt.

#39

The majority of the PFSF funding, sadly, came from wealthy families of patients who are no longer with us. It’s publicly known that John Santmann himself contributed $500k USD when starting the org.

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#40

The patiens are often young men between 18 and 46 yo. They struggled in their jobs often and have not much to donate. Otherwise in bloodworks and treatment flow thousands per each.

Since Mitch joined the staff media / YouTube presentation developed enormous. Maybe @Dela have some thoughts wich can be discussed. We all need time to bring us in constructive in the community.

But how more we are as greater the awareness. And even to discuss here brings traffic on the forum, sometimes new ideas. Nothing than a dead forum prevents visitors and lurkers more from sign in. That’s really a fact too. For me it would be interesting to hear about all the old cases and their development.

@Sugarhouse next podcast release will inspire more forum member to speak out public. These going to rise more awareness to our cases.

Let the users have discussions, traffic on the forum is important for donation, scientists, media awareness and health organisations as important as more users.