I am 30 years old, I’ve had TN for over 6 years, I volunteer for the TNA UK and I’ve never actually met anyone face to face who also lives with trigeminal neuralgia.
I started volunteering with the Trigeminal Neuralgia Association UK in the COVID 19 pandemic, so I never got the opportunity to meet the trustees I volunteer with. I meet with my lovely support group over Zoom.
I’ve always placed massive importance on community. I started this blog when I felt alone and speaking to, now, thousands of people also living with trigeminal neuralgia, has got me through my darkest times.
A doctor can tell you what medication or treatment might work for you. They can tell what you might be, or should be feeling. A good doctor is worth their weight in gold. However, sometimes, you could just use a good friend who understands what it really feels like to not be able to go outside on a breezy day, because your face will hurt. Sometimes, you need to talk to someone who also is in pain for them to just get how depressing and isolating it can feel to be fatigued and sore.
Now, I have the amazing opportunity to meet a group of people, face to face, who all have neuralgia. On Saturday 20th November, the TNA UK are hosting their annual conference in London, after coronavirus put all face to face work on hold for almost two years. Open to both members and non-members, there will be speakers in the medical profession, refreshments and lunch and, most importantly, the opportunity to meet people who know how you feel. It’s an all day event in central London, from 10.30 to 4pm. The charity’s AGM (annual general meeting) will be held before the conference, at 9.30am, so if you’re a member, make sure you head down early!
The speakers at the conference will be the TNA CEO Aneeta Prem, Dr Imran Noorani, Dr Robert Coveney, Dr Giorgio Lambru and Professor Joanna M Zakrzewska, so if you’re interested in hearing about neurosurgery, or dentistry, there is a talk for everyone.
This November will be the first time I’ve stood in a room of people who actually understand how I feel. I feel so blessed that I’ll be able to meet some of you and to not have to explain my twitches, or my neuralgia sneeze (if you know, you know!).
You’re not alone in this. There’s always someone to talk to.
You can purchase your ticket by clicking here and I want to know if you’ll be attending, so I can meet you and hear your story!
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