This time my blog post will be very personal again. I want to talk about Trigeminal Neuralgia a topic that is close to my heart.
Trigeminal Neuralgia is best described as chronic facial pain. I have it since I’m 13 years old because of a sinus surgery (that went wrong).
Over the years I had surgeries, different medications, injections in the face and countless other methods that I tried but nothing helped. It just dulls the pain a little. There has not been a day without pain for me for the past 17 years! And it affects every aspect of my life.
This is also the reason why I’m so passionate about bringing awareness to my illness and over the years I joined many Facebook groups where we talk about our experiences with medications, surgeries and doctors and how to handle our daily lives better.
Trigeminal Neuralgia is known as one of the most painful conditions known to mankind and not many people know about it. Even some doctors don’t know what it is and it happened to me that they had to use google in front of me. Yes, that happened.
Light up teal
To bring awareness to the illness and in the hope that Trigeminal Neuralgia will be added to the “Health Topic List” the Facial Pain Association initiated the International Trigeminal Neuralgia Awareness Day on October 7th.
We are also hoping that with the “Light up Teal Day” we can get better access to resources and get more funding for Trigeminal Neuralgia and other Facial Pain Disorders.
In 2019 almost 200 buildings all over the world where lighting up for us. In 2020 it will be the 8th time that we are having the International Trigeminal Neuralgia Awareness Day and the goal is to have even more buildings light up teal for us this year.
How charities use social media
The facial pain association uses specific hashtags to promote the “Light up Teal Day”. Some include #LightUpTeal #trigeminalneuralgia #FacialPainDisorders #TNTeal and #WHOHealthtopiclist
“Light up Teal” and the unique hashtags that are used with it, are good examples how to spread awareness and make the public more aware in the hopes that the audience acts in real life. That can be a letter to the government or fundraising for research.
Charities often blog or post about individual stories that can be inspiring to other people who have the same illness. I know that reading other people’s experiences helps me a lot.
Of course, charities that want to raise funds have usually a donate button on their websites or an online shop where you can buy merchandise (T-shirts, coffee mugs etc.).
I think we have all seen the pink ribbons for breast cancer or the red ribbons for HIV. Trigeminal Neuralgia has a teal ribbon that you can buy as well.
Most charities focus on Twitter, Facebook and Instagram where they always reach a different audience as we know by now. On Instagram and Facebook charities like to post Info graphs and statistics.
LinkedIn is mostly used to show what the company does and not to promote the charity itself. Charities usually find their employees there.
But they all use hashtags as mentioned earlier. Most charities have a hashtag that is unique for their cause.
Some charities might also have their own Facebook group. The Canadian Trigeminal Neuralgia Association has their own private group on Facebook where everyone can share their experiences and stay up to date on events and the newest research developments.
This is just a short summary of how charities use social media today.
Are you part of any charity? Or do you follow any charity actively online?
I think we forget sometimes that one click can mean a lot to a person. It does to me. Thanks for reading.
Take a look at my newest blog post about Trigeminal Neuralgia and how charities use social media. http://bit.ly/31NFacw
Here’s my newest blog post about Trigeminal Neuralgia, social media and how charities make use of it. #TN #FacialPain #Socialmedia http://bit.ly/31NFacw
Source: Facebook & Twitter Logo from https://logodix.com/