Can raising awareness ever be detrimental?
Every cause needs awareness. Sometimes communities forget that the cause is represented by many different faces, experiences and stories and, when awareness of the condition or issue they are living with is not represented in the way that they can relate to, they can react negatively.
I experience this doing my job running The Ehlers-Danlos Society. I have been working in this field for the past five years as a CEO and patient advocate. In April 2011 I became one of the first known people with Ehlers-Danlos Syndrome (EDS) to complete the London Marathon. A documentary was made following my journey and to raise awareness of the condition. Although on the whole the positivity outlining my story was well received, there were some who were not happy that EDS was shown in a way they could not relate to.
I would like to believe that my story and experience was not detrimental. I think it is important to show all parts of the vast EDS spectrum. It is frustrating when stories make the media with incorrect medical information. We are fighting to raise awareness and education and when wrong statistics and information is put out there it can be detrimental. But what it does mean is the term Ehlers-Danlos syndrome has reached a larger audience and hopefully they may reach our social media and website, where the information is correct.
I think in a world where the correct information is only a click away the wrong stories can be frustrating and a set back, but not detrimental. What I set out to do in my role is to ensure that all the information we manage is correct, reliable and up to date. Then anyone who is signposted to us knows that they can rely on our content.
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