Guys, besides baylor in september which other studies are ongoing or are going to happen? What can I do to help myself and the othes? How is this possible that so many people take propecia and only (how many we have on forum?) are here? Pfsfoundation is working and what did they do during all of those years?
1 Like
We are trying to raise money for a genetic study to see if certain people are genetically predisposed to this disease
Minimum $300k
Take the survey, find people to fill out the survey from other groups
Donate if you can
If you have reach in real life, try to leverage your network/resources if you can/have the skills
But isnt actually finding a cure a better option and make studies for it? How many money we have atm? I know that preventing this is important but if we have something to improve our condition, wouldnt it be better? Or I just dont understand something.
Does anyone actually read what I post on here or am I just wasting your time as well as my own?
I don’t think you’re wasting your time.
I agree with you that one of the main obstacles for us is recognition.
1 Like
We need to make studies in order to find a cure or therapeutic option bro
You got it backwards
You’re very right. Have you considering signing up to our YouTube project and/or submitting an anonymous written piece detailing your story for our site?
1 Like
Yes , I hear ya on that 
I have not but I’d be interested in doing both …as an anonymous!
What about pfsfoundation? What are they doing this whole time?
Very interesting, indeed! Some questions pop up:
-
In order to prove that, Wouldn’t we need to know how to characterize the condition 1st?
-
And what can we expect from proving this thesis, how does it draw us closer to a cure or cause? Does it not cut against our interest when “it is our fault”, while also reducing the interest for a solution (if it would only benefit this small group of susceptible people)?
Lots going on in the PFS world, exciting times indeed! Keep up the good fight!
hoping for better days for us all!
The PFS Foundation is just a few people doing volunteer work. It’s not very different to the forum staff, just that they have a formal legal organisation.
If people think the Foundation is a huge organisation with several floors worth of offices and people in a skyscraper and offices around the world, they are mistaken. The Foundation cannot do anything, if we don’t provide the resources.
I believe that the same difficulty that patients have with doctors, the foundation has with scientists. but in another proportion.
I suggest that should have more interaction between the forum members and the foundation.
I think this is the first step. it generates trust and unity.
People see the foundation like a big and distant organization. I agree that the name “foundation” and the profissional website layout cause this.
2 Likes
Guys I’m willing to so anything for us and me. What can we all I do? I’m really interested to count how many of us are willing to do so.
Sorry, guys, but I just don’t think the Foundation will get anywhere.
PFS is different for everyone. My friend also has PFS, but his only symptom is that he is no longer losing hair because finasteride shut down his hair follicle’s sensitivity to androgens. He has more hair now than ever.
In terms of muscles, bone, mental state, libido and sexual sides, he’s in the clear.
The second statement does not give credence to the first. If you subscribe to the theory of receptor overexpression being caused by epigenetic dysregulation, then I’d like to inform you that epigenetic dysregulation can be site specific. Tissues can be affected to different degrees (and some can just be entirely unaffected). Also tell your friend to buy a Mega Millions ticket.
4 Likes
well there’s a hypothesis here is that the condition is “gene silencing” and the rumors that come out of the baylor study is that there is some sort of gene disruption
but suppose we study our genes here, if we find that all of us have same overlapping genes/dna whatever then that would be another angle that would help us find the mechanism of the disease.
we have to do multiple studies to find the exact root cause as you can see.
also, if we can also prove that SSRI and acutane victims also have the same genetic predisposition (assuming we are on the money here) then that would be an even bigger deal
would make huge noise everywhere, attract easier funding and resources etc
For some perspective, our membership is 5,000+
For an even greater perspective, the PAS community has existed in different incarnations since the emergence of the internet, with people self-experimenting with what used to be referred to as “home remedies” (herbal and alternative therapies) and seeking medical attention for persistent side effects since the early 1980s. All those people in all that time could never produce a replicable treatment.
3 Likes
It’s also probable that the people who recovered didn’t have PFS but rather temporary conditions or conditions with similar symptoms such as hypogonadism, dysthymia, short-term side effects of medications, etc. Their belief they had PFS may have been the result of nocebo effect or apparent alleviation of symptoms due to placebo effect.
As far as I know, even after decades now, there isn’t a single proven recovery.
1 Like
Yes and of that 5,000…how many have made more than 5 posts? I would guess its at most 20pc.
My point being that the vast majority of recovery stories probably do not bother to post…and why would they come back here? I dont blame them for never coming back given the the suffocating negativity on this forum
I agree that there has been no silver bullet cure found to date but there are common threads across most of the recoveries a) time b) pro-hormones, herbal or otherwise c) general good health
To say that there have been no legitimate recoveries is simply incorrect, unhelpful and likely to cause unnecessary stress to any individual who has just discovered he has this issue for the first time
In fact, on the contrary, I personally think that the majority of people recover to some degree over time, but unfortunately those worst afflicted are probably the most frequent posters on here…which is totally understandable
6 Likes