Thursday 15 August 2013

Trigeminal Neuralgia - Public Service Announcement

This is a Public Service Announcement that has been made by the Facing Facial Pain
Research Foundation. It is something that we are circulating far and wide and sending
to television stations around the world. We are hoping that CNN will pick up the
story which will raise an enormous amount of awareness.

http://ireport.cnn.com/docs/DOC-1019024

This is the comment I made in the hopes that the film and the comments combined
might convince CNN to help. This would be televised internationally!

Trigeminal Neuralgia has truly destroyed my life as I knew it. I've lost almost all of my friends, I've lost my nursing career, my freedom, independence, my place in society and I've lost myself. After several different medications I'm now taking a large cocktail of meds that have a multitude of horrible side effects. If I'm lucky enough to sleep it is usually drug induced and it is the only time I'm not in pain. However the pain often wakes me or prevents me from sleeping. If anyone puts 'the suicide disease' into Google, TN is what they'll find. It is widely accepted to be the worst known pain in the medical field and yet, despite all of that, it is still so unknown. If the WHO were to add TN to their health topics list, the world would address this condition. Information would be widely available, more funding for research to find a cure or better medications and give us sufferers some hope. But without awareness and without informing people about this condition, nothing will ever change. People wait years for a diagnosis, have extensive unnecessary dental work done and visit several different specialists before having any idea what they are dealing with. At that point it is often a long process before finding medications that someone can tolerate and after several years and the pain ever increasing, there are surgical procedures available. These are inadequate and can only offer, at best, a period of time with less pain. Many times, surgery causes further problems and an increase in pain.
Please, please help us to get this condition known. The pain is like nothing I've ever dealt with. Not a day goes by that I don't wonder how I will carry on with this 24/7 torture. How can 'the worst know pain, 'the suicide disease', be something even doctors have never heard of?? That's how serious this situation is. It isn't just our friends and family who have never heard of this, neither have many health care professionals. Without the help of other sufferers, the media, social networking sites and WHO this situation will never change. We desperately need to be given some hope for the future. CNN have the opportunity to make people aware of the agony of this condition.




                                                           Image by Nikki Samuel