Hyperhidrosis (HH), a skin disorder characterised by excessive sweating beyond the requirements of the body, is known to have negative implications on the Quality of Life (QoL) of HH patients. I am part of a team (lead researcher) from CSER Welsh School of Pharmacy developing a new measure for assessing QoL in HH patients. This blog is our medium of sharing our experiences in the research process and connecting with interested patients and other researchers.
Sunday, January 15, 2012
Am placing my bet on facebook
I hope you've had a good start to 2012 !
As you may know Facebook recently passed the 750 million monthly users mark. I must confess that it gives me goose pumps to imagine what will happen when facebook passes the 1 billion users mark – I hope we’ll all be there to witness. In the meantime lets focus on the current situation. In hyperhidrosis terms, taking a conservative prevalence rate, of 1%-3%, it means 7.5 to 22.5 million facebook users struggle with hyperhidrosis. Again, using the current figures that 65% of sufferers have not sought for medical attention, would put the figure of facebook users who can benefit from treatment at 4.8 million minimum. Now, go to facebook and see the current groups and discussion on hyperhidrosis...its an absolute far cry!
While I fully appreciate the true nature of the beast in that people don’t feel comfortable talking about it. The most successful hyperhidrosis patient groups on facebook have a few hundred users. What are my qualms with these figures? Well I feel it’s a lost opportunity and chance for the silent sufferer ! Its no secret that todays events are shaped by information. And the single most channel where that information is being shared is on facebook. Moreover, the beauty of facebook is that it is like God’s grace to mankind – it is free – no need for propagandas and campaigns ! To put it bluntly we are in the post “campaign” era. In the new era its simply one humble person sharing his story to another humble person, and letting the whole world eavesdrop. Just that, has proven to be more powerful than the a 1000 of tanks or billion-dollar value marketing campaigns. We have witnessed within the last 12 months how facebook has been harnessed to facilitate change, both social and political.
It is in this context that am arguing that worst enemy of hyperhidrosis patients is not lack of campaigning, but silence. As I hinted in my last article, changing society’s views is not easy, to a large extent human beings are programmed to go with the current of social views and not against it. Now in the context of facebook, “social views” are now subject to one single medium of information – the discourse going on on facebook.
One clear barometer of how society views any medical or clinical condition of is to the amount of research on that condition. For hyperhidrosis it’s absolutely a far cry. Yet we all forget that companies, universities, research institutes are comprised of human beings...who feed on the same diet of public information and discourse. What are the chances that these people all somehow wind up on facebook to link up with others? By making hyperhidrosis an embarrassing condition not to be discussed openly (this is not to minimise the experience of the individual patient) a sentence is being passed on how society ought to view the condition.
Its exciting therefore to watch a real-life experiment, to see what the impact of the increasing hyperhidrosis discussions on facebook is going to have on clinical research as well as on activities of pharmaceutical companies for this condition ! Already the increasing importance of hyperhidrosis in Brazil for instance has already been noted ! In the mean time we all have work to do, LETS KEEP TALKING !
Subscribe to:
Post Comments (Atom)
Hi! Maybe you should try miraDry? It works wonders with me maybe it will for you!
ReplyDeletehttp://www.sweatingsolutions.org/
ReplyDelete