Gracie's AVM Charity Music Night

Hi there! My name is Gracie. I am 23 years old and from Wigan. I am raising money for two charities close to my heart, after it was found in September 2023 that I had a large congenital brain AVM. Thankfully I have had two surgeries for my AVM now and am on the mend, slowly reducing all my drugs so that I can get back to living life properly. It has not gone yet but is hopefully shrinking over the next couple of years.

My facial pain started when I was 18, in my first year of uni, but I was sent away by doctors and dentists who insisted I was just grinding my teeth at night. Turns out I have a condition called trigeminal neuralgia aka "suicide disease", which is intense facial pain caused by my AVM pressing down on the nerve in the right side of my face. This was discovered when I was living in Australia on a gap year, and the dentist I worked for told me to get an MRI.

My pain is under control now thanks to Medic*tion, but when it was so intense that I couldnt eat, sleep, talk or touch my face, it was the Walton Neuro Centre in Aintree that supported me. I was shocked to find that they rely heavily on donations to their charity and feel strongly about giving back to the hospital that has cared for me so well.

The AVM butterfly charity raises money for research into AVMs - arteriovenous malformations. These are best explained simply as very rare tumours made from blood vessels that lack capillaries, which when ruptured can cause strokes, permenant disability and even death. I have been incredibly lucky to make it to 23 without a rupture and have met and heard stories of survivors who have had it so much worse than me. AVMs are most likely to rupture between 10 and 20 years old, making it a condition that destroys the lives of many young people.I want to raise money to help find better treatment for AVMs and pay for more surgeries like the ones I was very lucky to recieve.

If you would like to read more into brain avms, please check out:

https://www.butterflyavmcharity.org.uk

And if you would like to know more about trigeminal neuralgia, I think this website explains it well:

https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344

Host or Publisher Gracie Broad