Monday, 26 August 2013

Peyronie's Disease and Social Networking


Social media is increasingly playing a noticeable role in our lives. Whether we're tweeting one another on Twitter, liking a facebook post from a friend or posting a comment on a Youtube video, it's something that a staggering number of us are now part of. There is also a trend to make these platforms less anonymous. Facebook for example insist that you use your own name. Google also prescribe to that philosphy of 'openness' by insisting on real names on their Google+ platform and Youtube. While there's something to be said for that approach, it also impacts upon privacy, which in turn changes behaviour. That's certainly apparent when you research peyronie's disease on any of these websites.

Facebook has over a billion active users. One thousand million. As you can imagine there are pages set up for favourite pop stars (Lady Gaga 58 million 'likes' - read 'likes' as members or followers), animals (one cats page with 2 million likes) as well as serious health topics which are often subject of public appeals - like breast cancer (various pages with hundreds of thousands of likes, one with 3 million+). What of peyronie's disease though? Well I found one page with 11 likes, one with 72 and... well that's about it. It's staggering isn't it. The condition falls so neatly into cultural ideas of masculinity, embarrassment and goodness knows what else that almost no-one on the face of the planet wants to step forward and say that they have it.

I do understand that on the whole Facebook interests a younger crowd, but 1) some young people have peyronie's disease too, and 2) many millions of older males do use Facebook. I also appreciate that compared to other health concerns like breast cancer peyronie's disease isn't as widespread. That said many millions of men have it. It's not a 'rare' condition by any means. It's the same story on Google + and even on Twitter - where again there is a tendency for people to reveal their identity and thus not be open about certain topics. twitter is also a platform that's very restrictive in terms of word count, so the complexity of the condition may not be suited to the service.

One exception to the rule is Reddit. It's a social network / news site that is much less personal. Most members are anonymous and it's common for people to create throwaway accounts where they talk about a specific issue or share a concern without making it something personal to them. As such there are at least a few peyronie's disease related posts and accompanying discussions. I view this as a real positive as almost all of those involved in these conversations are becoming more informed with regard to the physical and mental aspects of this unfortunate condition. It increases awareness, and that's something that is really important. With peyronie's in the public eye there is potential for learning, understanding and more emphasis on treatment.

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