A Pained Life: Competing for Awareness on Trigeminal Neuralgia Awareness Day

A Pained Life: Competing for Awareness on Trigeminal Neuralgia Awareness Day

Teal_Ribbon_Trigeminal_Neuralgia_AwarenessThe 2nd annual Trigeminal Neuralgia Awareness Day is Oct 7, 2014. Monuments and buildings throughout the world will be lighting up teal, the color assigned to trigeminal neuralgia (TN), yet we cannot get the news media to pay much attention.

Some people have been able to get local newspapers to take notice; but despite tweeting, calling and emailing ABC, NBC, CBS, CNN, and even some TV hosts and correspondents directly, not one has responded.

(To be fair, last year CNN.com did a story on TN Awareness Day.)

ABC’s Robin Roberts was talking about children’s cancer recently, working to raise awareness. Major attention was paid when she was going through her own illness. We also saw it with Katie Couric many years ago, with her husband’s horrid battle with colon cancer. Celebrities develop a disease, or someone close to them does, and the coverage is immediately there.

I am glad they get the attention. Colon cancer, children with cancer, cancer itself, is terrible and deserving of notice and awareness.

The problem seems to be you need a “name” — a celebrity — or someone who can personally reach a celebrity or the news anchors and producers.

The Miami Towers on TN Awareness Day in 2013

The Miami Towers on TN Awareness Day in 2013

The above is how I started this column when I first began to write it. Before I came back to the computer to finish it, I learned there may be another reason: October is Breast Cancer Awareness month. All three morning network shows have gone pink.

Maybe there is room for awareness of only one disease at a time?

A handful of people have made enormous strides in getting monuments and buildings throughout the world go teal for TN Awareness Day.

Some have personal contacts with someone who is a “name” or has a following, even if small. One person’s friend is a boxer who has promised to wear teal. Another person knows a soccer player who will also go teal on the 7th. They are working on getting a nationally known team to go teal, but there is not yet a decision.

What do we have to do to get the attention of the media? The attention of the world? Major buildings going teal is wonderful but not worth much if very few notice. And even fewer know why those buildings are teal.

Is it that diseases that affect fewer numbers of people, that are lesser known but in their own way equally as devastating as cancer, are not worthy of attention?

What if more awareness was brought to chronic pain conditions such as TN? Would Pharma and the world became more aware of the need for more research, treatment, and — with great hope – maybe even find a cure?

That is one of the major reasons to have TN Awareness Day. To raise not only awareness, but money for research, so that our numbers, like the numbers of those affected with cancer and other better known illnesses, become fewer and the amount of money spent on finding a cure becomes greater.

Carol Levy

Carol Levy

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.

Carol is the founder of the Facebook support group “Women in Pain Awareness”. Her blog “The Pained Life” can be found here.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Authored by: Carol Levy, Columnist

There are 3 comments for this article
  1. michael snyder at 1:22 am

    im not a name yet but i play professional golf and have tn. recently diagnosed so im just starting to figure out how to deal with everything. i can put some stuff on my bag or shirts or hats so at least a bit of a word will start to get out. let me know how i can help.

  2. Wendy at 6:07 pm

    Thanks! I have wondered, even though this is an international effort, if it might not be more effective held on a day in September — the month the US focuses on pain. The awareness is so important as it does lead to at least some funds for the Facial Pain Research Foundation to help towards a cure! In my opinion, anything that could increase publicity – positive publicity – ought to be seriously considered.

  3. Sarah Donly at 9:37 am

    Thank you so much for getting this information public. Trigeminal neuralgia and it’s many related conditions cause incredible amounts of pain, and other losses for those who suffer with it and their families. Increased awareness of this rare and “invisible” chronic pain condition will benefit all.Thank you for writing this, and introducing the condition to many readers