Beth’s Story

Hello, my name is Beth.

I am 33 years old and I am from the North East of England. I have Neurofibromatosis Type 1 (NF1) due to a spontaneous mutation, and I am the only person in my family with the condition.

I was first diagnosed with NF1 at the age of 14 following the discovery of a brain tumour called a pilocytic astrocytoma. Next year will mark 20 years since my diagnosis. Prior to this, at the age of 11, I was diagnosed with idiopathic kyphosis and scoliosis. This resulted in a twelve-hour operation to insert titanium rods and screws into my spine to correct the curvature.

As with everyone who lives with NF1, we are all affected differently. For me, it changed a great deal — especially my outlook on life. My school years were particularly challenging, as I experienced bullying because of my condition.

Today, my NF1 continues to affect me in several ways. As a result of the brain tumour, I have lasting effects including permanent weakness on my right side and brain damage. I also have multiple fibromas throughout my body. These include tumours related to another brain lesion believed to be a Multinodular and Vacuolating Neuronal Tumour (MVNT), as well as fibromas located on my scalp, in my chest, abdomen, perirenal space, and right leg. I have two fibromas on either side of my knee affecting the saphenous nerve, as well as a plexiform neurofibroma on the peroneal nerve. Due to weakness and limited mobility, I now use a crutch to walk.

In addition to NF1, I am autistic, have Mitral Valve Prolapse, and am currently being monitored for a possible diagnosis of Multiple Sclerosis (MS).

I first came across Nerve Tumours UK shortly after my initial diagnosis. I was referred to them by CLIC Sargent (under their previous name, The Neurofibromatosis Association), who believed I would benefit from specialist support for this rare condition. I have been seen regularly ever since. Over the past 20 years, the specialists and nurses have supported me greatly, helping me to better understand my NF1 and providing guidance whenever needed.

Since my diagnosis, I have organised several fundraising events, including dog shows, raffles, and, a few years ago, a sponsored haircut. Raising awareness of Neurofibromatosis is incredibly important to me. I want more people to understand rare genetic conditions and to support those living with them — whether that is someone with Neurofibromatosis themselves or a loved one.

Due to the nature of my NF1, I am unfortunately unable to work, so I dedicate my time to hobbies I am passionate about. I love literature, especially Shakespeare. I also enjoy listening to music — one of my favourite singers is Kylie Minogue, whom I have admired since I was about two years old. She is one of my heroes. I am also a huge Marvel fan and enjoy following the franchise. In addition, I have a keen interest in ancient history, particularly Norse myths and legends.

This passion is why I am setting up a YouTube-style podcast series called NF Talks. In this series, I will share my own experiences with NF1 and speak with guests from across the globe who are living with NF1, NF2, or Schwannomatosis. My aim is to raise greater awareness of Neurofibromatosis conditions and highlight the impact they have not only on individuals but also on their families. The more awareness we create, the greater understanding there will be — especially as every person with Neurofibromatosis has a unique experience.

I hope that through my podcast, I can continue to spread awareness of Neurofibromatosis and support those who are still navigating and trying to understand the condition — especially young people who want their voices and stories to be heard.

Index and Epsiodes: 

January 2026

A small introduction about the planned NF Talks Series.

February 2026

About my NF1