Ann Conroy trust was established in 1980 by Ann Conroy,  a syringomyelia victim,  to help fellow sufferers and their carers and to fund research into the condition of syringomyelia and associated disorders.

I'm hoping to raise money for The Ann Conroy Trust, they continue to offer support, education and  research into two related conditions that I have , chiari malformation and syringomyelia .

 Chiari is a brain malformation where the back part of the brain, the cererbellum, descends into the spinal canal obstructing the flow of cerebral spinal fluid to and from the spine to the brain.

Syringomyelia or syrinx, is a build up of the fluid within the spinal canal.

Symptoms are wide and varied. Chiari causes severe pressure headaches, especially at the back of the head, made worse through exercise, straining, coughing and sneezing. It causes dizziness, sickness, muscle pain and weakness, numbness, pins and needles, tiredness, dysphagia (swallowing problems) nystagmus (repetative involuntary movements of the eye) and other visual problems, severe neck pain, bowel and bladder problems......the list goes on and varies from one person to another.

I started with symptoms as a young teenager but wasn't diagnosed until I was 18. The main symptoms then were horrendous headaches, sickness, dizziness, balance problems and nystagmus. It was through going to the optician with my nystagmus that I was referred to a neurologist, who admitted me to hospital the same day and I later had decompression surgery to relieve pressure on the brain. I had a further decompression but unfortunately my neck started to collapse, I then had to have metal plates put in, to stabilize my neck, I think this  is extremely rare.

Unfortunately I've deteriorated since then, I now walk with a frame inside and a use wheelchair outside. Along with all the other symptoms, three years ago I got pneumonia and was quite poorly for awhile. Unfortunately the pneumonia was caused by the dysphagia and I had to have a feeding peg fitted, which I will most likely always have.

This is why it's so important that research is done into these conditions to find a cure. The Ann Conroy Trust is the only UK charity that funds research and supports newly diagnosed patients, there is so much more I need to say about the charity but for further information you can go to the Ann Conroy website at http.://www.annconroytrust.org

I'm only giving the details of my symptoms to explain the need for supporting the charity. The sooner the diagnoses the better the outcome. 

I'm not doing anything amazing to raise money , just selling wristbands and pens, having collections, coffee mornings etc....I'll keep you updated but if you have any suggestions please let me know!

I'm turning 40 next year and I have some fantastic friends and family, who always buy me such amazing, generous presents!  For my 40th birthday I'm asking that instead of gifts they donate a couple of pounds to The Ann Conroy trust. The best present they give is their support, love and friendship, they are all amazing !! I just want to take this opportunity  to thank you all for everything...love you !  

Thank you for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.