David’s Story - Community and Acceptance

Hi, I am David. I was born in Hertfordshire and brought up in Worcestershire. I moved to London at the end of the nineties to fulfil my dream to work in high end hospitality services for the corporate and gastronomy sectors.

I now work as a catering manager for an office in Central London and provide butler services for high-net-worth individuals and families. In my spare time I am quite sporty. I enjoy going to the gym, cycling, swimming and playing rugby. I have NF1.

In both my career, and my personal life, I was always active, taking part in inclusive team building activities, specifically in diversity inclusion at the workplace. I volunteered in 2018 and 2019 at London Pride, and I also joined an all-inclusive rugby team, the London Stags, in 2019.

When the public was asked to volunteer in the first vaccination campaign, following the first wave of Covid 19, I joined St John’s Ambulance to administer the Covid vaccine.

It’s hard to say exactly when I first was aware of my Neurofibromatosis as my Mum has it, so I was always aware of its existence. Although back then, it was referred to as Von Recklinghausen’s. From birth, I had the café au lait marks so it was inevitable that the neurofibromas would follow.

I think the lumps started forming in my late teens. It’s one of those things that just becomes such a part of you that you just don’t really notice. My NF1 did not really bother me in school or while growing up. It’s only now that, as I write this, and I look back at some photos, I can see how they have increased in number. From my late twenties, I seemed to have a spurt in growth of the number of lumps on my back and torso.

The first time I was really self-conscious about them was probably when I was in my early twenties. My cousin, who was probably 9 or 10 at the time pointed out quite a prominent neurofibroma that I had on my upper lip. She told me it looked like I had a pea stuck under my lip. She was right, out of the mouth of babes as they say....

This was the first one that I had removed; it was quick and easy, and my GP carried out the procedure at my local surgery. Over the years, I have had over a dozen removed. Some as a local anaesthetic procedure, some deeper ones with general anaesthetic. The most recent surgery removed a neurofibroma the size of a squash ball from the top of my bottom, so I couldn’t walk at more than a shuffle for a couple of weeks. I also got a post operative infection and mid-covid had to go to A&E with a temperature of 39 and get pumped full of antibiotics. While in A&E I compressed a nerve in my leg sitting with my legs crossed and lost the use of my right lower leg for a night. So the peripheral issues have been quite a journey.

They pondered dermatology, plastics, oncology. I suggested neurology but was told no. 

In the end, I was referred to a great oncologist who specialised in removal of more generic lumps, but I was under the impression in post-surgery consult that there were lots of complications that he had not anticipated, and it turned out to be major surgery. His advice was not to undergo something like this for several years unless urgent. Also, there are other lumps he has definitively said cannot be touched surgically, but I wonder if a Neurofibromatosis specialist saw me they would have a different opinion.

About twenty years ago, I was referred to Professor Rosalie Ferner at Guys. I think that was when the official diagnosis of Neurofibromatosis Type 1 was confirmed. The other interesting thing I found out from this process was the link between Neurofibromatosis and hypermobility. I definitely seem to havea disproportionate number of joint injuries and issues. This is really where the biggest impact on my life has been. I have had knee problems, orthotic inserts, shoulder dislocation, and two subsequent nerve impingements and then tendon tear. Most recently a DVT related to shoulder has caused mobility issues. This means I am now on anti-coagulants for the foreseeable future, which means not playing rugby, which was quite a big part of my life.

Therefore, I have had to look elsewhere and at other activities, and I have now joined a hiking group instead. 

We have a family ethos for trying times in life based on a famous prayer that has helped me accept that NF is part of me.

The lumps do get comments online when on dating sites. I am sometimes asked what the lumps are, and if it’s contagious, and I have to explain that it’s genetic, even then some people block me. More recently I have been asked if it’s monkeypox.

I came to terms a while ago that my lumps are just a part of me, and to embrace them. Last year my rugby team was approached to partake in a naked calendar shoot supporting charities that aid diversity and inclusivity in sport, promoting inclusion, LGBTQ+ rights, gender equality and better male mental health, so I decided to embrace the chance to celebrate body positivity and show off, lumps and all.