The founding of Trigeminal Neuralgia Association Australia
by Irene Wood Founder of TNAA
My worst experience of pain was when a size 9 soccer boot met my shin. It was debilitating pain. I was carried off the field and the tears were freely flowing.
So, when my mother described her pain, it was "okay so you have this electric shock zapping through" and left it at that. After all, pain was that tender purple and dark green patch on my shin, and like all pain it would eventually go away. I was busy living my own life and left the matters of my mother’s health to her doctors.
Until, one day, I saw my mother wince in pain while tears rolled down her cheeks. I watched as she bravely tried to cope. I wondered to myself “how bad does this get?” I had no idea what she was suffering from and neither did she.
Her pain worsened and for months her food in semi-fluid were consumed through a straw. To avoid triggering an attack, the straw was carefully placed in the other side of her mouth. Each day she became more reluctant to leave her comfort zone, and sat in anticipation of her pain. Sleep was no longer an escape. She began waking up in the middle of the night screaming with pain.
Her frustration in her helpless suffering was expressed by her “One minute I am in dire pain and then next minute I am fine. You must think I am mad or pretending and whining again.” Then when her pain became more dominant her misery was reflected in “ If I could die the pain would stop.”
Eventually I learned the name of the disorder and delved into the Internet and began learning about trigeminal neuralgia. Although by then my mother had undergone a radio frequency rhizotomy and was pain free, I could not shelve the information I had gained and pretend no one else needed it, for it was obvious that many were suffering helplessly like my mother, in isolation and in ignorance.
In June 2000, I registered with the Trigeminal Neuralgia Association in the USA to start a support group here in Sydney and began the slow road of contacting sufferers throughout Australia, in particular Sydney, New South Wales. I was passionate about sharing the information. I felt that with knowledge they would cope better. There was also the need to let others know that they were not alone with this strange pain.
There was no need to suffer in silence.
In February 2002, we felt the need to reach out nationally and that would be better served by a national organisation. Frank Martin worked tirelessly on the rules and constitutions and registered the association with the various bodies. We were officially registered with Department of Fair Trading New South Wales as an incorporated body effective from 9 January 2003.
As support groups were located in various other states it was necessary to register also with ASIC. This took effect on January 21st 2003.
In keeping with the Association’s goal to have a unified understanding and an improved approach to the treatment of Trigeminal Neuralgia and other related facial pain, the association holds a biennial conference.
We feel very blessed with the fantastic support we have enjoyed from local and international speakers over the years.