Wednesday, 12 June 2013
It's All About Awareness!
So here we are - our very first post on our End TN blog. If you have just come across us after searching online about Trigeminal Neuralgia, then we are sorry to meet under these circumstances, but we hope you will find something here to help you. If not help, hopefully we can give you support and hope for a better future. If you already follow our End TN page on Facebook, we hope you will stick with us and follow our blog too. If you haven't seen our Facebook page, it's here.
If you look at the right hand side of this page, you will see some links which will take you directly to our Facebook, Twitter and You Tube pages. There is also a page called "who we are" to let you know a little about us and what are doing at End TN.
When we say End TN, we actually do mean we would like to see an END to Trigeminal Neuralgia, Atypical Trigeminal Neuralgia, Trigeminal Facial Pain, Neuropathic Facial Pain, or any other type of Facial Pain. (Sometimes doctors don’t actually know what to call it). All bit of a mouthful, so we’ll just refer to everything as TN or Trigeminal Neuralgia.
The pain can come in several ways....like a bolt of lightning, like an electric shock or it can be grinding, drilling, aching or burning to name just a few descriptions. It can be a one off shock or it can be a constant ache. The pain is sometimes referred to as the suicide disease due to the severity. Everybody’s pain is different and everybody’s reaction to meds, treatments or surgery is different.
But no matter what it is called and no matter how painful it is, there is one fact about TN which everyone hates.
Nobody can see it.
Nobody can see what a horribly painful condition Trigeminal Neuralgia is. To suffer pain like this, you would think at least something should show.
Trigeminal Neuralgia is just one of many Invisible Diseases. But even though it can't be seen, it doesn’t have to be silent.
We need to talk about TN, write about it. Write to magazines, television shows, radio, newspapers. We need to all do we can to help people learn and understand Trigeminal Neuralgia. We need awareness. Awareness amongst non-sufferers and awareness amongst the medical profession.
There are other campaigns on the go just now too, so together, we should hopefully be heard. We need to make sure we are heard!
One of the other groups campaigning has a petition asking the World Health Organization to take action on Trigeminal Neuralgia. Please sign the petition. Whether you have TN or you know someone with TN, it is important for WHO to realise that so many people want something done about the condition. You can find out more here. They have also organized an international TN awareness day for Oct 7th, organised teal coloured ribbons, and are trying to raise money for the Facial Pain Research Foundation.
So.....as the picture says, “Together we can make that voice louder”
And if we do, hopefully, one day, we might actually see an end to Trigeminal Neuralgia.