My last foray into mainstream media led to a curious reaction. Last post, I wrote about Channel 10’s newspiece entitled “Back Pain Mystery”.
To my colleagues and to those of us working to raise the profile of the disease, it was a win. Prime time news, if only for a fleeting minute or two, highlighted a disease which is poorly understood, one that certainly struggles to get a mention.
Inaccuracies….yes, there were some.
A news angle which simplified the disease way too much…this was always on the cards.
An inability for a short news story to convey the many difficulties patients may suffer from this disease and their family and friend’s lack of understanding…what else would you expect?
Facebook discussions ensued with vocal ankylosing spondylitis sufferers explaining how unhelpful this type of mainstream media is in improving how people may understand their plight.
I’ve thought about it a bit. Actually, a lot. And those vocalising are correct. Not so useful for their situation.
It’s however about a bigger picture. As all of those with ankylosing spondylitis will attest, it’s a frustratingly long time for most before they even know what disease is causing their chronic spinal pain.
A time spent on treatments which are less effective. Wasted time and money. Additional pain and lost opportunities from things foregone.
It’s estimated that many wait a decade for the diagnosis.
This is way too long!
We need to reduce this and that’s the goal of the current Don’t Turn Your Back On It campaign.
To balance that short Channel 10 news story, many of us involved in the campaign are talking to journalists from internet news sites and newspaper. Some of these conversations might find their way into print or onto the net. There’s likely to be inaccuracies and any stories are likely to be incomplete, never quite explaining what it means to suffer the disease.
Here, I enclose 2 short videos, this time directed to general practitioners, released a few weeks ago. The aim again was to highlight a disease that many general practitioners would think is very uncommon in their clinics, to make them think of it when assessing those with unresolved, chronic spinal complaints.
Understanding back pain: differentiating inflammatory from mechanical
Ankylosing Spondylitis: the dangers of late diagnosis
We’re trying to make a difference. You can help by spreading the message. If you have colleagues, friends or family with long term spinal symptoms, they should consider taking this simple screener to see if ankylosing spondylitis might be the possible cause.