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Author Topic: Buzzfeed — How to make peyronies go viral  (Read 2906 times)

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Crankitup

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Buzzfeed — How to make peyronies go viral
« on: December 09, 2014, 03:27:54 PM »


I've had it guys. I've had it with all the gloom of our lives and the way we're used to inching forward on the tiniest morsels of hope.

It's time to act now. And you know how? This is how:

This Woman's Powerful Breast Cancer Photos Sparked Online Storm

While it's swell that we're ringing up congressmen and doctors and writing letters to editors, the real and much more effective way to do it, especially in this era of new media, is what the woman above did: go viral.

I wonder if anyone here saw it and thought of peyronies. I did instantly — they're both diseases of such graphic nature.

Imagine if we put up pictures of OUR deformities up on a site like Buzzfeed, and with a story that says "this is how thousands of men are living while hiding from the world". Imagine if that piece will have stats and all the details on how diseases affecting a much smaller populace get a hundred times more funding than peyronies.

Do you think that won't make a good story? Because as a journalist let me tell you, THAT is a real news story.

Check out another one of Buzzfeed's breast cancer photo pieces:

A Photographer Is Taking Unflinching Portraits of Young Breast Cancer Survivors (We could even contact this photographer directly. He's currently heading a project solely for photographing the scars of breast cancer survivors)

Buzzfeed, in fact, has a whole bunch of photo collections on BC survivors: Breast Cancer news

We could do a million different things like this even if not exactly this. Maybe they won't allow pics of penises on their site, but that can be worked around.

The bigger point is, I don't think a lot of people realize how easy going big is in this digital age. Journalism itself is undergoing a fundamental transformation, and Buzzfeed is actuallly LEADING it. Gone are the days when years of slow-mo editorial writing would gradually accumulate enough awareness for a cause to actually lead to practical action.

This is the age of Justin Bieber, one big hit and you can be a sensation, creating ripples everywhere. Get it? I'm saying all this because we can be that one big hit. If not on Buzzfeed, then some other avenue, if not through news, then some other medium; maybe a video, a documentary, a blog with all our myriad depressing personal stories put together in one place.

Whatever it is, none of it is hard to do and is sure to get our predicament into spotlight. I feel like most peyronies patients are either too old to care about advocacy for peyronies or too old to know the one-hit-wonder world we live in today; they give up hope on any awareness movement thinking the marginal and delayed results can never be worth the effort.

That's not how it is, guys. I may come off as extra optimistic about publicising peyronies and maybe I am, but insofar as the strength of our collective story is concerned, I'm sure ours is one powerful underground tale that the internet can't wait to get its hands on. If we spend the entire 2015 attacking every public forum for awareness of peyronies and its need of funding, the peyronies landscape will look FAR, FAR different in Dec '15 than in Jan '15.

Question is, are you willing to tell your story or would you rather just mope around?
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Skjaldborg

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Re: Buzzfeed — How to make peyronies go viral
« Reply #1 on: December 09, 2014, 05:30:29 PM »

I think positive energy is good and any news about Peyronie's is bound to be beneficial, but I think comparing it to breast cancer is an error of false equivalency. Breast cancer is a killer, plain and simple. While Peyronie's is devastating, it is not deadly. For this reason I think the general public would have a hard time viewing Peyronie's deformities in the same light as they do scars from breast cancer treatment. It is unfortunately more likely that a Peyronie's photo spread would be viewed with disgust or mockery rather than the respect or contemplation that comes from viewing survivors of a deadly disease. (I am well versed in how the internet behaves; it is the medium for the worst of us and the loudest of us.)

I still think reaching out to urologists, surgeons, and pharmaceutical companies is the better approach. They operate in a medical context and are therefore better able to understand the disease and how to treat it. Better yet, they know how deal with insurance companies to get Peyronie's treatments covered.

Regarding Peyronie's and the internet, there was an AMA on Reddit a few months back about a guy who "broke his penis" and several comments in the thread mentioned Peyronie's. It's not huge, but it's a start. One beneficial effect of younger men getting Peyronie's is that the disease is, slowly but surely, getting mentioned more on mainstream forums and websites. Better information and treatment for this disease will not happen in a day; it will be a long journey with slow and steady progress.

-Skjald
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Old Man

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Re: Buzzfeed — How to make peyronies go viral
« Reply #2 on: December 09, 2014, 10:02:13 PM »

Hey Guys:

Just want to add my 2 cents into the mix of this subject. I meet the questions about going
''public'' with Peyronies Disease therapies involving the mainstream of the subject with somewhat of a dilemma.

I am a prostate cancer survivor since April of 1995. My current PSA is and has been 0.0 ever since the surgery. I have been a prostate cancer counselor with the American Cancer Society. Therefore, I am thoroughly familiar with breast cancer therapy along with Peyronies Disease and prostate cancer therapy.

Breast cancer in women especially (men can and do have breast cancer too BTW!) carries a much greater visibility than prostate cancer as well as Peyronies Disease. Women seem to have a more acceptable place in the medical world than man (only MHO) about breast cancer. As it has been said, breast cancer is far more deadly for women than prostate cancer in men. The therapy for prostate cancer does have a huge mortality rate, but nothing compared to breast cancer for women.

All of the above is just my considered opinion based on my background working with both breast cancer and prostate cancer patients with the ACS for several years.

Old Man
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Peyronies Disease at age 24, Peyronies Disease after radical prostatectomy in 1995. Open heart surgery 2004 with three bypasses and three stents. Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries in the last 10 years.

Crankitup

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Re: Buzzfeed — How to make peyronies go viral
« Reply #3 on: December 11, 2014, 02:26:34 PM »

Skjaldborg, you make sense. A photo op of this is probably not a good idea. I didn't really mean to pit something like cancer against peyronies, though. Those posts were intended more to show that it is easy to go mainstream with our predicament.

But when you say such a story may not have the desired effect, I have to say, that sounds like exactly the mindset that's been holding peyronies patients back.

Everyone here should tell themselves that this is not an either/or issue and we don't deserve to be 'one-upped' by cancer because cancer is fatal and peyronies is just inconvenience. Please don't think like that and don't assume other people think like that. Not sure how much it has affected your life, but I'm a depressed 24 year-old with 6 years of this disease behind me and a lifetime of it ahead of me. Anyone who thinks peyronies doesn't kill people should try living my life.

THAT'S the story that needs to be told. I don't where, how and in what format, but can we all at least agree that it's a story worth telling? That our suffering needs to be heard? And the fact that it affects too many of us to get this little funding? That is a point worth shouting out loud, no?

Skjaldborg you do mention Reddit and call the peyronies mention there a 'beneficial effect'. So you do like this mainstreaming of the issue, right? All I'm asking for is to accelerate this beneficial effect, this mainstreaming.

Unlike you guys, I believe it is needed and will bring a lot of good. This is the medium for real world awareness and action.

As for "reaching out to urologists, surgeons, and pharmaceutical companies", anybody who thinks that can bring results can keep doing it. If anyone has an actual plan to go by in that regard, please do share with me.

I'd like more people to share their thoughts on this. I only created this thread because I saw Stan on APDA and several people here grumbling about how little we do to publicize our problem. I thought a different approach was imperative and certainly worth exploring. If we're actually ok with old school letter-writing gentility then my apologies.
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BoatFool

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Re: Buzzfeed — How to make peyronies go viral
« Reply #4 on: December 11, 2014, 11:36:03 PM »

I don't think you need anyone on this forum's approval to move forward.  Just do it.
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james1947

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Re: Buzzfeed — How to make peyronies go viral
« Reply #5 on: December 12, 2014, 02:14:51 AM »

Crankitup

BoatFool ir right!!!
Quote
I don't think you need anyone on this forum's approval to move forward.  Just do it.
Good to have new members with new ideas :). Some of the older guy's here got tired from many awareness try & miss.
Just please don't forget to update us regarding the results.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

skunkworks

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Re: Buzzfeed — How to make peyronies go viral
« Reply #6 on: December 12, 2014, 08:16:12 AM »

Something along those lines is a really good idea though. When I read that cadaver study, it made me worry about all the men out there who have this condition that never get help and probably never have any idea that there are ways to combat it.

More awareness would help more men seek help.

welshwales

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Re: Buzzfeed — How to make peyronies go viral
« Reply #7 on: December 19, 2014, 11:25:24 AM »

I don't want to be a downer, but there have been a number of occasions where publicity has caused much ridicule. Many people think wonky penises are funny, they are often the butt of jokes - the One Direction/Wrong Direction jokes for example. I think a buzzfeed article would get a lot of hits, but for entirely the wrong reason. A slide show of "The World's Craziest Dicks" would certainly be a hit. I think it could do more damage than good.
If people were losing their testicles or having their penis amputated, then I think the imagery would certainly have the hard hitting effect you are thinking of. Unfortunately funny looking willies just don't have that same impact, not unless you have personal experience of the difficulties it can cause.
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RoyHobbs

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Re: Buzzfeed — How to make peyronies go viral
« Reply #8 on: December 19, 2014, 05:47:40 PM »

The few friends I've shared this with had no idea Peyronies was possible. So even negative attention may spare a few from this awful condition.
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james1947

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Re: Buzzfeed — How to make peyronies go viral
« Reply #9 on: December 19, 2014, 06:21:15 PM »

Every man can be the next Peyronies sufferer.
The problem is that until it happens, you can't imagine that you will be the next and you don't give any attention to the subject.
How to bring the subject to the "front line" in a way that it will really help, I don't know.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum
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