Georgia’s Story

I was diagnosed with Neurofibromatosis Type1 (NF1) at nine years of age after a visit to the doctor, which was prompted by concerns related to reoccurring joint and abdominal pains, headaches, disrupted sleep, and vision impairment. Following this, the doctor made a referral to Alder Hey Hospital in Liverpool, where a specialist promptly confirmed the diagnosis of the condition, with my café-au-lait marks being the most prominent verification. To the best of my current knowledge and that of my family, I am the sole individual within our family affected by NF1, resulting from a spontaneous mutation of the gene.

Growing up, I struggled to come to terms with my condition and often questioned, 'Why me?' I was always embarrassed to admit that there was something 'different' about me due to things that happened at school. Bullying was a reality for me for most of my younger years, labels were unfortunately given to me, and school reports constantly remarked the same thing in relation to me being 'too chatty', 'being easily distracted' and having 'no coordination'. It felt like no one at school (more so at secondary school) understood me. I was often told off for things I truly had no control over.

My parents repeatedly had to explain my condition to my teachers and why sometimes I'd have to miss school due to sickness or appointments. My mum even remembers having to fill in forms at the start of every school year and having to re-explain my condition over and over at parents' evening. An NF1 specialist and my counsellor even had to visit my secondary school at one time as teachers still didn't seem to understand oreven acknowledge it.

I often had to undergo laser surgery for hypertrichosis, which is what people would point out and ridicule me for the most. This is excessive pigmentation and hair growth on the skin, and mine appeared on my forehead. I used to go to the most extreme lengths to hide and cover it up. If someone had told me when I was younger, that I would be able to talk about this so openly and confidently, I would never have believed them, but I now realise the bullying was not a reflection on me, or who I am and never will be. I went through most of my compulsory education years with undiagnosed Attention Deficit Hyperactivity Disorder (ADHD), which ultimately made my journey a lot harder, and up until the age of 16 (when I was diagnosed and had officially left school), I often blamed myself for things that had happened. I received counselling for a number of years in regard to self-image and how 'I went about things'. I was even under Tier 3 mental health services at one point, which I look back at now and can't believe how far I've come in my journey of accepting myself. I was lucky enough to have a very supportive family around me during this period.

I discovered Nerve Tumours UK (NTUK) after having one of the biggest health scares I ever had in 2020; I was told something had grown on my brain, which led to me becoming severely unwell during this period. I was even having fits, which, until this period and discovering this charity, I didn't even know was linked to my condition. However, I finally found a space with dedicated specialists who understood me and a community with other patients and families affected by NF1 who cared, listened, and offered advice. All those negative experiences I had when I was younger, suddenly didn't feel as important anymore. I'll always owe a great deal of gratitude for those who helped me through those dark times.

I decided to create a fundraiser for NTUK in 2021 after being inspired by all the amazing people who work so hard to fight for NF1 and all those people who fight with NF1 and raised
almost £700. Again, in 2023, that same horrible fear came back, but this time, it affected my ear, which led me to undergo surgery; still, my family, my friends and the NTUK charity and
support group gave me all the love and hope I needed until I once again heard the words 'all clear'.

NTUK has been such a safe and supportive place for me, and the people I've met along the way have genuinely changed my life. I always wanted to work with children upon leaving school to provide a positive learning experience (different from the one I had), embrace individuality, and end the stigma concerning disabilities, whether they are 'visible' or 'well-known' or not. After realising that other people from the NF1 community felt the same, after all the years of struggling and pleading to find answers, I decided to write my university dissertation on NF1: its wide spectrum; how it affects each individual differently and its need for recognition within education. I split my work into sections to be as informative as possible: the biology of NF1, the co-morbidities of NF1, the impacts of limited knowledge regarding NF1 and the educational difficulties, challenges and experiences of individuals with NF1.

After months of planning and researching, which proved very difficult due to the absence of established literature and research, I submitted my dissertation... and my work got a First (I even got a first overall in my degree,and an assignment of mine is now scholar work!) I was so happy and proud that NF1 had finally received recognition. I was also so happy and proud, that I went from dreading going to school and believing what people said about myself and my future, to having ambition and a love for education and not being afraid to speak about NF1. I’ve even taught English in Thailand, which was an opportunity that reinforced my love for learning and my passion to help others wherever I can. Going forward, I plan to continue spreading the word about NF1 and familiarising people with the condition, especially within educational settings and will use my dissertation as the basis of this.

Much to my younger self's surprise, now, I never question, 'Why me?' Instead, I embrace my condition. I understand my brain and body may sometimes work differently. NF1 makes me who I am. Living with NF1 has equipped me with resilience and confidence, fostering a determination to support others and communicate the message that prevailing over adversities is always possible, regardless of the challenges you may face. Always embrace your uniqueness and consider it your superpower. There is strength in being different and a lot of good that can be brought to the world by being just so.