This month has been a big one in our household. Patrick’s pain on both sides of his face is back with a vengeance. The gamma knife treatment he had back in 2021 had kept the pain at bay but now it is back.
We all know how debilitating this awful condition is, and the utter helplessness of family members who really do spend days looking for that mystical unicorn with a magic wand. The zombie scrolling through google desperately searching for new treatments, or research, or ideas in the search for hope.
Our circumstances like many others, means we are reliant on the public health system, we took early retirement when Patrick’s condition was still undiagnosed and impacting his ability to work. Private health costs had escalated, our superannuation fund, which we are reliant on, had been smashed, by first the GFC, and then the COVID years smashed it a bit more.
We are not unique. We hear many stories from members how the condition has impacted their working life and that they find themselves on the treadmill of seeking diagnosis and treatment and hope, all the while trying to manage their precarious financial situation. TN is not classed as a disability in Australia and even the Insurance Giants have no knowledge of the condition.
Part of our Vision is to raise awareness – trigeminal neuralgia is rare, most people have no idea such a condition exists.
This month is Rare Disease Awareness Month – we need to raise the profile of the condition – see our article about what you can do to highlight trigeminal neuralgia in February
The association wrote to the Queensland Health Minister, to request a meeting – see correspondence below
Nov 8 2022
I am the current president of Trigeminal Neuralgia Association Australia.
Our organisation has been supporting people suffering from trigeminal neuralgia for 20 years.
The WHO has recently recognised TN as a disability but there is very little awareness of the condition within Australia.
We are run entirely by volunteers and support sufferers with face to face, online and phone support group meetings.
It is extremely difficult getting stats within Australia about how many people actually suffer from the condition. Sufferers often have to leave work because the pain is too hard to manage, which is a huge economic blow for them personally and of course our countries economy.
I would like to start a conversation about how we can help our sufferers, with better access to medical care, more training for neurologists, more neurologists, better pain management, stop the huge number of misdiagnosis and disability avenues etc.
I don’t really know the best first step, so I am hopeful, you can help us to make a difference.
See our website for further info
I am sure you receive many submissions, but I am hopeful of a reply.
Feb 17 2023
Good afternoon Lyn,
Thank you for your email dated on 8 November to the Honourable Yvette D’Ath MP, Minister for Health and Ambulance Services and Leader of the House requesting to meet.
Apologies for the delay in responding. Unfortunately, due to a heavily committed schedule the Minister is unable to meet. She has asked Julieanne Gilbert MP, Assistant Minister for Health to meet with you on her behalf.
The Assistant Minister’s office will be in contact with you shortly to arrange a time to meet via telephone. In the meantime, should you need to contact her office please email: firstname.lastname@example.org.
If you no longer require the meeting, please advise the Assistant Minister’s office.
All state governments run the health offering within their state. We need to get all of the State Health Ministers on board to create a guideline for diagnosis and treatment of trigeminal neuralgia.
What else can you do to raise awareness about Trigeminal Neuralgia?
Last year we lit up landmarks in 11 cities on International Trigeminal Neuralgia Awareness Day October 7th. This year we want to achieve much more but our volunteer base is very small. I am asking that each of you read the article about what you can do to Light Up In Teal in 2023.
Direct involvement by members to nominate the next committee – we need volunteers
Lastly, my tenure as President has nearly run its course with our AGM scheduled for April 1st 2023, which will be conducted as a zoom meeting. You can read the information about the committee nomination process in the link below and I encourage you all to make a nomination online, consider volunteering and at the very least, add the AGM date to your calendar and be involved in the meeting.