Alexander’s Story

Alexander hasn't let his NF1 hold him back, and in July graduated from the University of Reading, with a 2:1 degree in Theatre Arts, Education and Deaf Studies.

Hi, I’m Alexander, I’m 21 and I have Neurofibromatosis Type 1 and Scoliosis. I was diagnosed by a paediatrician in 2002 when I was five years old and my Dad was diagnosed at the same time. Growing up, life was sometimes challenging in terms of being ‘different’ from other children… for a start I was (and still am) significantly shorter than most people. I also looked a lot younger than others (and still do, but less so now). Other children (and sometimes adults!) did not believe me when I told them how old I was. I was so young for my age and struggled academically and when I first started school I struggled with my behaviour, but thankfully soon learnt right from wrong! I needed a lot of support with basic things that other children didn’t need support with, which was very disheartening and embarrassing.

When I was in Primary School, my parents fought to get me one-to-one support in class, but I kept getting turned down… however, eventually, I got it towards the end of primary school. The support continued throughout my education and really helped me to improve and catch up. 

I experienced quite a bit of bullying and people being patronising during high school. My high school days were the hardest and it was really difficult to notice other students going through puberty much quicker than me. When I was 16 and studying for GCSEs, I started to experience a lot of back pain and stiffness. I was diagnosed with Scoliosis, which was such a surprise because it seems to come out of no-where. From age 16 to now, the hardest thing about my health has been adjusting to life with Scoliosis and figuring out my limitations. Some health issues that have been a problem all my life are constipation and a weak bladder. This has been really tough, especially when people notice how often I go to the toilet and comment on it. 

Despite all the challenges that I faced and continue to face, I’m very pleased to say that in July, I graduated from the University of Reading, with a 2:1 degree in Theatre Arts, Education and Deaf Studies! If you had told me that I would be living independently, 150 miles away from home and studying a degree, I would have thought you were mad! At the moment I have decided to take a break from theatre work and peruse charity work. I am now working as a Chaplaincy Assistant at the University of Reading and I’m really enjoying it so far! I am very pleased to still be living in Reading as I have made friends for life here and continue to hang out and have fun with them.  I’m very involved with a local church and from time to time I enjoy making cards. 

If you’ve recently been diagnosed, don’t worry – you’ll be OK, and NF isn’t that scary!  With determination, hard work and the right support, it is possible to achieve your goals!