Liz’s NF1 story – This is the real me

For Rare Disease Day, Nerve Tumours UK are raising awareness by focusing on stories that highlight the impact of NF (the group name for Neurofibromatosis Type 1, NF2-related-Schwannomatosis and Schwannomatosis) every day. They want to #MakeNFVisible. This is Liz’s story.

Hi, I am Liz, a mother of three from Yorkshire.

I was diagnosed with Neurofibromatosis Type 1 (NF1) when I was 5 years old. My mother had NF, as did her mother and a couple of her brother and sisters. I had hard painful lumps and café-au-lait marks from an early age.

Growing up, I found it really hard to fit in at school because of learning difficulties and for the fact I was very small and extremely skinny for my age. When being bullied or joked at, I snapped. I was often alone and too small to join in play. I found it hard to keep up with my school work, writing was difficult and mathematics was even harder. I couldn’t calculate even the simplest numbers. I was kept in play in school and the teacher would mock me and the class would laugh when I got things wrong. As I went into secondary school, I was in the lowest set of classes and felt I didn’t learn much. It was decided that for most of my exams, there was no point in me doing it because I simply couldn’t do them. I left secondary school with no qualifications.

Somehow, not long after leaving school, my back began to hurt but I ignored it for some time as I did not to want to make any fuss. One day I woke up and couldn’t feel my legs and it felt like I was walking on jelly and kept falling over. I was taken to hospital where I had some tests. Then I was blue-lighted to another hospital where a scan was carried out.

Sometimes it can be hard to get tumours on the surface of the skin removed as unfortunately some doctors will see it as cosmetic but if they are causing you a lot of anxiety and pain then you can get them removed. In August 2023 I had some removed in Newcastle and a slight debulking of a plexiform. It was in a plastic surgery day ward and the staff were fantastic.

I was given tea and toast and biscuits on arrival. I was awake during my surgery but all I could feel was a slight tugging of my skin and I was being spoken to softly throughout. It made the situation more bearable and calmed my anxiety. To anyone wanting or even waiting to have some tumours removed when it’s annoying you and ruining your self-esteem, be brave and go for it . It won’t change everything about your NF but it’s a little step of control over the nasty little bumps and you may feel loads better.

Then I came across Libby Huffer, who is also affected by the condition herself and is the founder of the social media group Faces of Neurofibromatosis. She is a public campaigner for those affected by NF and has taught me to not be afraid or hide away and to raise awareness.

She is my inspiration and so I decided to help others. Please have a read of my poem below and if you’d like to, please share!

If you or someone you know is affected by NF you can visit Nerve Tumours UK’s website or email [email protected].