Monday 24 June 2013

Facing Reality : Children Can Also Suffer From Trigeminal Neuralgia


The three of us started our awareness campaign last December, not quite knowing exactly what we were doing or how to do it. But we just muddled along at first, then quickly realised that we needed a plan.

We wanted to create awareness, but we also wanted to have a place where people could find help and advice from fellow sufferers.

It was soon falling into place. We had a growing community of TN sufferers who were more than ready to help and support one another.

Living with this kind of pain gives you one thing. Empathy for other pain sufferers.

Sometimes it has been so emotional reading people’s stories. Reading of the years they’ve spent trying to get diagnosed. Reading of how living with the pain has taken their work, their relationships, their friends, sometimes their lives.

But there can be nothing more heartbreaking than one thing we discovered....the number of children who suffer from Trigeminal Neuralgia. That discovery has been shocking and has brought many tears. Yes, we had read that TN can affect children, but when you actually meet some of them, or their parents, it is truly heartbreaking.

That, more than anything, pushed us. We had to make our awareness campaign work. We had to be able to make people understand this condition. We had to let people know how important it is. We know we can’t make miracles happen. But without awareness, people will never know about it. And if it is not known about, there will never be hope.

And everyone needs hope.

Especially children.


A picture drawn by an eight year old child
when asked by his doctor to describe his pain.
This picture speaks a thousand words.



6 comments:

  1. As someone who also suffers, the pain for me is bad enough but at leat I have the vocabulary to describe my pain, but saying that the picture describes the pain better than any words could.

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    1. Frances, we agree. It is difficult enough for an adult. Just so much sadder when children are involved, especially if they are unable to explain.
      Thank you for reading and commenting.

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  2. It truly breaks my heart that a CHILD has to suffer through this horrible disease. It's bad enough for us adults, but a CHILD????? I just can't imagine what they (or their parents) go through.

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    1. Yes, truly heartbreaking Donna.
      Thank you for reading and commenting.

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  3. This site is wonderful. Yes...we needed this voice. There are so very few people that understand what this pain is. Are there studies that we can volunteer for?

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    Replies
    1. Thank you so much for your comment. TN definitely needs more awareness. Hopefully, through the various internet sites we have, we can make a bit of a difference.

      For studies, keep a check on Trigeminal Neuralgia Association pages. Many countries have their own, and they do work together. (In USA it is called the Facial Pain Association).

      Thanks for your interest and support.

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Thank you for your comments.