Gut Check: What have YOU done, for sufferer's with PFS to get the word out and help?

General Discussion Media & Awareness
#1

What have I done to contribute to our cause in the past?

What am I doing now to help?

  • Plan on getting involved in organizing men on this forum, for potential petition’s and protest’s.
  • Contacting local congressman and politician’s and getting the word out.
  • Trying to get a television story broadcast about brain fog issue’s in men and PFS.
  • Skyping with other member’s on here and offering any help, advice and support I can offer.
  • Plan on creating a separate website (with tie’s to this one) dedicated to the brain fog problem.

More people need to step up, and stop hiding behind the computer monitor! Just sayin’…

#2

Called the FDA 5 times, emailed them 10-12 times.
Done 2 medwatch reports.
Was interviewed for the Philly news story on Propecia Side Effects.
I have been interviewed and quoted in various articles on the subject of finasteride side effects.
I joined in a class action lawsuit in early 2011.
I have joined a Facebook finasteride support group (although its only a few of us in it)
I have told every friend, relative, doctor, scientist, lawyer and many others I have met about the side effects from finasteride.
I have emailed the New York Times, CNN, Foxnews, Newsweek, Parade, Erin Brockavich, about a dozen medical journals, mens magazines, and several local news stations and newspapers about the condition.
I have helped try to a get a wikipedia page started on the propecia side effects alone. (apparently they enjoy cock-blocking us on this)
I have written a few politcal reps.
I have spoken with doctors all over the country, including getting into a argument with some professor at John Hopkins who refuses to recognize finasteride side effects.
I have spoken with scientists in Brazil, Germany, and Italy about the side effects.
I have spoken with Dr. Irwig.
I have contributed my DNA and test results to the Italian study Awor is helping with.

Right now I continue to send out a few emails a week to whatever media/activist sources I think can help us with our problem as well as calling some of them.

And I continue to talk to people on here and urge them to get the word out as well.

#3

Fantastic! Keep it up and contact me if you want to discuss organizing.
Maybe we can team up, as i live in the USA.

“Remember everyone, they(the powers that be) cannot ignore the number’s and us for long - We are coming and we are strong!”

We can also think about bringing aboard some OWS(occupy wall street) people and fill them in on our problem with Merck and big pharma, which is basically poisoning our population. They would be an open minded/willing to listen asset towards organizing and getting more people to spread the word regarding our activism. If guy’s on this forum pussy out, we don’t need them - we could use the folk’s from occupy acting(a physical body) on our behalf.

The more people to help us join our cause the better, and I fell strongly that they would help us.

#4

I know you’ve both done alot toward getting the word out and that really is this community’s major role right now. Kudos to both of you.

Maybe trying to recruit the OWS folks would be a tad counterproductive. :slight_smile:

#5

I’ve done a lot of emails and phone calls. But obviously, it’s going to take more. Something big needs to happen to really get this going.

Example: Accutane was on the market for over 25 years. Its generic is still prescribed, and all that stands in the way of iotretinoin and a potential victim is some worthless “IPLEDGE” paper that most won’t even read.

We need to shift paradigms. We need to show people that androgen deprivation therapy for treatment of male pattern hairloss is as cruel as a lobotomy for behavior disorders and that it belongs in the primitive past.

#6

well said! agreed.
btw, let me know if ANY of you want to skype with me.
just pm me if interested. my pleasure. let’s get our head’s and voices together for idea’s and then action plans.
it would be great and a pleasure to talk to any of you. thanks!

  • rob
#7

I was asked a question, by an “anonymous” member (will not single him out even though i know who - no need to)
in a private message recently. Went a little something like this :

“Dude many people here are doing as much as this or even more but simply dont like to show off.
I dont understand the point of this thread.”

My Answer to him and anyone else with a similar feeling’s:

“The point is just that…i don’t see it man! they should show off! too much lurking in the shadows must stop.
i am not a bragger (if you get to know me) or anything…the point was to generate a reaction.
i think people are not doing enough. that’s only MY OWN opinion.
please don’t take offense to it, but i’m glad it got a reaction out of you somewhat.
i’m also happy you are doing something - thanks and keep going.
you could also criticize me in the thread if you want…that would also be beneficial in getting reaction.”

I hope you all can see my point here.

#8

I think the thread is valid. It makes us remember how much has been done and shakes off the feeling that things aren´t moving. It also may inspire new ideas. My share:

  • I started a blog with a friend in Brazil to raise awereness about Finasteride dangers, it is receiving a lot of visits. Many visitors are men who have not started treatment with finasteride yet and may not start because of what they read there. It is unfortunately the only source in portuguese to read about Post Finasteride Syndrome on the internet.
  • I created a newsletter from the blog, and emailed it to over a hundred dermatologists in Brazil.
  • I advertised the blog in hair loss forums on the internet.
  • I updated the portuguese wikipedia finasteride page last year. It is still there, it wasn´t blocked. Before, there was only the manufecturer data.
  • I also updated the spanish and french wikipedia finasteride pages. All of them describe the possibility of permanent side effects since last year.
  • I had an appointment with Dr. Crysler back in 2008, we discussed possible treatments and what to do.
  • Emailed the FDA three times.
  • I emailed two journalists in Brazil who have a talk show about sex (Finasteride has been a topic on the shows)
  • I had an appointment with a influent endocrinologist in Brazil, he is a professor at USP. Explained him the whole situation, he was puzzled and promised to study about it.
  • On yahoo answers brasil, there is often someone asking about Finasteride (“if he should start”, “if it causes infertility”, “if it is safe”, "side effects’, etc). I have saved the option to be informed by email everytime someone asks about Finasteride in portuguese. Then i reply and post all the media links about the issue.
#9

Sent 3 letters to the FDA, and participated in irwig’s study. Have left reviews on as many medicine reviewing sites as I could find. I’ve seen numerous doctors.

I know it’s not much, considering the damage the drug has done, but I find it difficult to care or get fired up about the issue of awareness sometimes. It sounds crazy, but I even find it hard to be angry or frustrated about my own condition. But I’m working on it.