Liz’s NF1 story: This is the real me

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

I was diagnosed with 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 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 was beginning to hurt but I ignored it for a bit, 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.

In May 1987, I developed a nerve compression, requiring emergency removal of a golf ball size tumour. This involved a laminectomy of T6,7 & 8. As a result of the surgery to my thoracic spine, I developed a secondary kyphosis.

In 1989, as my vertebrae were beginning to collapse and compress, passing a marked deformity to my spine, surgery was performed, with a fibular strut graft used for anterior spinal fusion. After surgery, I was left deformed with a very large hump and very high degree curvature.

I have more NF tumours now as I’ve aged. Some are hard like beads.

They cause me a lot of pain every day and I still find it hard physically and mentally to cope with day to day. It also affects my memory.

I felt so alone for many years and I am relying on the help of my children who all have NF1. 

Then, I came across Libby Huffer, who is 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. Read my poem and share! 

For Rare Disease Day 2024, organised by the Genetic Alliance, Liz's NF case study was included in a briefing to @dianabarran, Minister for the School System & Student Finance, on challenges people with rare conditions face in mainstream schooling. Her story shows the potential benefit of better awareness of rare conditions in schools.

Nerve Tumours UK joined in this year's Rare Disease Day theme "Facts behind the Stories", highlighting the diverse outcomes and impacts that NF can have on individuals and families.  

Follow in Liz's footsteps and share YOUR story by emailing info@nervetumours.org.uk.