Mohamed’s NF Story

I was born with Neurofibromatosis, but in on the Ivory Coast where I am from, we do not do genetic tests. It was not until I moved to the United Kingdom and did a skin biopsy after some long-standing skin problems that I found out that I had Neurofibromatosis. This diagnosis of Neurofibromatosis during my GCSE years was also a major driving force towards my decision to pursue a medical degree.

I always had lumps on my body, especially the characteristic café au lait spots you get from NF. They did not really bother me until my teenage years, and then they affected my self-esteem. I tried a few doctors back in Angola where I lived at the time when my spots first developed, but they could not find out what they were. Eventually in 2018, a few years after moving to the UK, a skin biopsy confirmed the disease, and reading about the condition made me want to become a doctor; an oncologist.

I was always thankful my NF was not as severe as some other people’s. I did not have any other major symptoms apart from the skin manifestations, which did affect my self-esteem, and I was able to get over them for the most part with the gym. We did some tests and I was the only one in my family who seemed to have been affected by the disease due to a mutation. We were able to live as normal.

In early 2024, I started experiencing some weird sensations and pains around my body, which I had never experienced before, and on the 15th of October 2024, a few days before my 22nd birthday, I was diagnosed with a Plexiform tumour on my brachial plexus. I was fortunate enough not to have any further weakness in my body and no red flag symptoms. 

Knowing the risks of progression,  I decided to sign up for a body building show in case I ever do get weakness, and my diseases does progress. It was also not until further down the line I realised how much this actually did affect me mentally. I was only 22, with a tumour doing a degree. I was doubting my decision of being in medical school, and thinking if anything does happen, I should be spending my 20s enjoying my life and not traveling on the wards and hospitals. 

I started to slack with some of my placements, whilst before I would go for the recommended requirements, I would settle for the minimum. After a meeting with the university, I started speaking to the school wellbeing team and opening up about my feelings made me realise how much this was really affecting me. I started opening up more and now I am in a much better place, with post show meals planned with my twin and a very fun summer with my family..

I love the gym and everything fitness, from training and nutrition, I had 2 coaches in the past 2 years and it’s something I would now consider doing myself. I am also a massive foodie, I usually eat clean but when I eat, I EAT (me and my brother would travel like an hour just to try a restaurant we saw on tiktok). I also like to watch movies, anime and read about advances in cancer treatment.

The charity is important because it spreads awareness of the condition, people will not look at me and say or think I have NF. They would not now about some of the troubles and symptoms I am experiencing. I remember my time at St John’s Hospice on placement, when I spoke to a patient who’s friend believed she was making her symptoms up because she looked “well”. I feel like people need to be made aware that people can be going through things despite looking well.

Fundraising for Nerve Tumours UK will allow me to spread awareness of the condition, and especially with bodybuilding, showing people that my café au lait spots and my lumps are not something to be ashamed of. One of my closest friends even said my lumps made me look like “killmonger” from Black Panther which was the vibe I am trying to give off when I am on stage. I first found out about Nerve Tumours UK last year, when I was experiencing symptoms and looking for others affected by NF.

I did not formally reach out until I was referred to the specialist centre in Manchester. I am now trying to actively get involved with the charity, and join the coffee mornings. Being a medic interested in oncology and medtech I found it appropriate to get CureAge involved, as they have the potential to cure those with NF.