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Poppy’s NF1 story

08 November 2021

Hi! My name is Poppy and I’m 19 years old. I work as a support worker in a care home and I adore my job so much! 

I was diagnosed with NF from a young age. So young, my parents can’t remember when I got the diagnosis. Because of my early diagnosis, I’m unaware of how it affects me. I have many cafe au lait marks and freckles. I don’t have any external tumours yet. Out of everyone in my family, my NF is the most mild.

When I was in school I struggled a lot with learning and making sense of maths. With my diagnosis of NF, I needed MRI scans due to an internal tumour by my brain and then later on in life, they found an internal tumour by my spine which had close monitoring.

I missed a lot of lessons in school because I got transferred to Bristol hospital for my MRI scans, because their machine is more powerful than the one in my local hospital. I also have an optic nerve glioma, which meant extra hospital appointments but luckily these were at my local hospital and I was able to go to school before and after the appointments.

 

I heard about The Neuro Foundation (now Nerve Tumours UK) through Helen Tomkins (Specialist Nurse) - she has supported me and my family for years and provided me with all the information I needed while growing up with NF1.

It’s important for me to fundraise for NTUK because my work will help my future family members with their NF diagnosis, treatments and research. My fundraiser is to simply walk 30 miles throughout the month of November, it begins on the 1st November and finishes on the 30th November.