Please bear in mind that I've used all of the typical ways of communicating, including the use of your website to email you. 1000 characters is hard to stick to, hence I've resorted to extreme measures! I've been emailing and tweeting you for over 4 years using various images, scan codes, links etc, but knowing how loved and respected you are, I haven't been surprised that my emails have failed to grab your attention. I also called your offices in Burbank California, from here in the U.K, not having a clue what I was going to say. But with the 8 hour time difference, it was late at night here and I believe that's a perfect excuse for my insanity! The young woman that I spoke to was lovely, but definitely thought I was a crazy Brit! I remember blathering on about how much I love you and your show and that I was desperate to get a message to you. To this day, despite all my various attempts over the last 4 years, I don't believe I've managed to get any of my message to you!
So today I'm trying something new.
Trigeminal Neuralgia (TN) is a condition that affects the 5th cranial nerve, causing severe, debilitating pain in the face, mouth, eye, ear, scalp and nose. We have 2 trigeminal nerves, one either side of our head and while most people have TN on one side, there are many sufferers who have bilateral TN. It is universally accepted, that TN is the worst known pain to science. Yet, it has remained unknown, by Doctors, Health Care Providers and the public for far too long.
In 2012 a sufferer from Boston, MA decided to look at ways to change this and decided that we should have an International Trigeminal Neuralgia Awareness Day on October 7th and our own awareness ribbon in the colour teal. She also started a website called TNnME which she updates regularly and is an excellent resource for sufferers and for sharing information to raise awareness. I met Toni Saunders in 2012 on Twitter and became one of many TN Awareness Fighters. Toni also started an online petition to the WHO asking for TN and other facial pain disorders to be added to their health topic list. This would provide more awareness, possible funding for research and better treatment options for all sufferers around the world. I have been very active in creating graphics for use on social media, reaching out to other sufferers and emailing mayors, members of parliament and many other people! While there are many, many things that have been important over the last 4 years, one thing that we remain very proud of, is the number of places that now light up teal on October 7th. These lightings have all been arranged by TN sufferers communicating with the relevant person at each sight. Please take a look at the impressive list which includes towers, bridges, buildings and monuments around the world.
http://www.tnnme.com/2016-light-up-teal-4-tn.html
On October 7th we are always online, posting pictures of events and spectacular lighting. But we use Twitter to help raise awareness by posting these photographs, using the hashtag #TurnTeal4TN
I speak for every sufferer of TN or facial pain when I ask that you join us on October 7th by wearing something teal and posting it on Twitter.
I am in no way artistic, but, to try and help, I have come up with a few very helpful suggestions.
A teal wristband. It could accessorise any outfit, but is often too well hidden!
A teal ribbon. Very subtle and often gets people asking questions. Good for awareness!
A teal wig. This could be fun and striking while raising awareness!
Teal boots or shoes. These could be big, fun clown shoes or a tasteful pair of loafers!
Teal earrings. A fashion statement that shout out to be heard. A great conversation starter!
A teal scarf. Not often needed in California but something lightweight could look good!
A teal handbag. What could be better than a big teal bag on your shoulder?! (Don't answer that)!
A teal shirt. Stylish, smart, fashion forward in a stunning shade of teal. A real awareness piece for any world famous actress/talk show host.
A teal hat! What could be more fun than a comfortable, slouchy hat?! Something certain to start an awareness conversation!
A teal bow tie, brooch and clowns nose. Nothing says 'Talk to me about teal' more than a rather eccentric outfit aimed at the 'Real Awareness Fighter!
Ellen, I am almost certain I've managed to identify something that you could wear on October 7th to help us raise awareness of TN - a condition that destroys lives and leaves us taking multiple medications or having major brain surgery, just for a chance to reduce our pain. What we've done is found some fun ways to raise awareness while remaining focused on the severity of this pain and all the sufferers around the world.
Please, please add your name to our awareness day campaign. I don't think you can even imagine how much of a difference it would make to our fight and our determination to make changes to the care and treatment options that are available to us. At the same time, we are all heavily involved in fundraising for The Facial Pain Research Foundation who are looking to find a CURE for TN and other facial pain disorders. They have some of the world's top scientists, giving their time and energy for free, to help people like me look forward to a brighter future. They are doing the research, in several different areas, relying totally on donations from the public. Please, take a few minutes to look at their website and see the magnificent work they are doing.
www.facingfacialpain.org
Here is our official Trigeminal Neuralgia Ribbon
