Donation protected
Hi, my name is Beth and I am raising funds to try new therapies which will hopefully make a big difference to my health and everyday life.
As many people know, I became poorly in Spring 2022. My world fell apart in a matter of weeks. I developed motor tics and verbal tic. Rages and hallucinations started along with irrational thought and inappropriate and impulsive behaviours. I went from being a very capable, independent, mature and academic teenager to a person I or no one around me recognized. It was very scary and everything changed for me. I started having seizures and episodes of paralysis.
It took until Nov 2022 to be diagnoses as having Paediatric Acute-Onset Neuropyschiatric Syndrome (PANS). Here lies the main problem. Although PANS is recognized by the World Health Organisation (WHO) and treatment plans are in place in other countries around the world, it is not recognized by NICE and therefore there are no guidelines in England that must be followed. I have therefore missed out on all timely treatment that could have been available to me. It is a postcode lottery of whether health professionals choose to help and understand. I haven't been lucky enough to have that support.
A little on PANS - my body is attacking itself. When antibodies are released to fight infection, a normal process for everyone, mine break through the blood-brain barrier and attach to a part of the brain called the basil ganglia. This causes inflammation which leads to a wide range of nasty and uncontrollable symptoms.
My Mum has spent thousands on getting a diagnosis and trying to find treatments that reduce inflammation and seizures but I still struggle daily. My problems stem from the inflammation and a dysregulated nervous system.
What I need:
There is evidence to suggest that Hyperbaric Oxygen Therapy reduces systematic inflammation, down regulates microglial activation in neuro-inflammation, supports neurological repair and improves detoxification. These sessions are intensive and come at a high cost. The programme alone costs nearly £2500 for a six week block (3 times a week) and I would like to work alongside a gut specialist
I haven't given up on life; I'm still here and I am still fighting this debilitating illness. With your help, I hope to be able to strengthen my body and mind and become more like the person I was before.
I will be organising some fundraising events over the next few months which I invite you all to attend or join in with if you can.
In the meantime, if you are able and willing to make a donation towards my treatment plan, I would really appreciate it. No amount is too small.
If anyone is interested in organising or hosting a fundraising event, please get in touch. Lets have some fun whilst we fundraise.
Thanks in advance!
Organiser
toni shepherd
Organiser