I'm fundraising for Nerve Tumours UK to help support people living with Neurofibromatosis (NF) - the condition that causes nerve tumours. Having NF1 myself, I know it is a life-long condition with very little research or knowledge in the medical field and no treatment in Scotland. It is a dominant genetic condition, which means someone with NF has a 50/50 chance of passing it down to children. However, it can also happen completely randomly. NF can cause a wide range of neurological and physical disabilities. A tumour can grow anywhere where there are nerves, and it can cause endless pain and problems. People with NF have to reduce their radiation exposure, which makes treatment and investigative scans even more difficult. Since these tumours grow on the nerves - surgeries are complicated and risky.

I was diagnosed with an optic glioma (brain tumour) when I was 16. I’ve had to have multiple investigations to ensure it wasn’t impacting my vision through specialised eye tests, EEG and over 10 MRIs. Luckily, it hasn’t grown so I haven’t required treatment but am continually monitored.

A year ago, I was told I had a 6cm tumour pressing against my brachial plexus and expected to be cancerous. I had to go for radical surgery to remove the tumour plus extra margins had to be removed as the surgeon had to presume it was malignant. Due to it being at the very top of my brachial plexus - this resulted in total paralysis of the radial nerve (biceps, triceps, forearm and hand). During the first surgery, they performed a nerve transplant from the back of my left leg. However, the likelihood of me ever having a function in my hand again was very low from the surgery I already had, so they did a second surgery, which re-routed nerves in my forearm.

There is no healthcare professional in Scotland to look after NF patients. This is detrimental due to the rapid nature of NF. If someone was doing regular checkups, the likelihood of me never having to have these radical surgeries is very high. Early detection of these tumours is essential to treat them straight away before they cause irreversible physical and mental damage. Nerve Tumours UK is trying to get more research, basic knowledge and general awareness of NF. Even though it is one of the most common rare genetic diseases, it is not well-known, managed or researched.