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Joy’s NF1 story

19 October 2021

My name is Joy, I have Neurofibromatosis Type One.

My parents don’t have NF, so my diagnosis was unexpected. My mom first learnt about NF when a neighbour had given her a newspaper for a recycling collection. My mom read some of the paper and came across an article about a boy who had a brain tumour, as a result of NF. The article described the symptoms of NF and my mom thought, “that sounds like my daughter”.

She took the article to the doctors but their conclusion was that I didn’t have NF. It wasn’t until I was 13 years old, when I had a tumour develop on my thigh. I went to the doctors about something different, and mentioned the funny lump on my leg. The doctors didn’t know what this was, so I got referred to a specialist. I went to the appointment and the consultant said I had “Von Recklinghausen’s Disease” and described how he had just cut 60 tumours out of his patient with the same condition. He wrote the condition on a post-it note, and that was it. I felt so alone, and scared. My mom however, still kept that article.

We were then about to get in a touch with a support group “LINK” in Wolverhampton and we got sent information from “NF association” (which was one of the older names of Nerve Tumours UK). Having the information really helped because it gave us not only information about NF but support to help me though it.

I have had one tumour removed, but been fortunate not too have too many health issues. NF has however caused my learning differences and I have struggled with dyslexia. I found it hard to get support at school and university, but I worked hard and was successful in obtaining a degree in Environmental Health. I did get the right support through “Access To Work”, and this enabled me to tackle my dyslexia and help me progress through my career. I now manage a Community Safety team and a public control room too.

I have got two sons, one who has NF and one doesn’t. When Ben was born, he had cafe au lait marks, so I knew he had got NF. Ben really needs a lot of support in school because of the impact that his NF has on his learning, but this doesn’t stop him and he is enthusiastic in everything he does.

Nerve Tumours UK have been fantastic in supporting him. One of the Specialist Nurses met with his Schools SENCO teacher, and they were able to speak about NF and explain what support he needed. As a result, he got a SEN plan which has really helped him and he is now awaiting further assessments.

"I really appreciated the support that Nerve Tumours UK have given me and my family so I wanted to give something back. I really enjoy running, so I thought a running challenge would be perfect. "

I really enjoy running, so I thought a running challenge would be perfect.  I had taken on the 10k ACIS in London for Nerve Tumours in 2019. However, I needed a bigger challenge, so I decided to complete the Chester Marathon. It took a lots of training, and I completed 3 half marathons, and two 10k races during my 20 week training programme.

"I also decided to write a blog. Not many people know about my NF, so I thought the blog would not only help share my story, but also to explain the condition and to share the difference Nerve Tumours UK have made. I managed to raise over £700 for Nerve Tumours UK and completed my marathon in 4 hours 21 minutes. I really loved the challenge, and its helped me shine a light on NF too. "