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David’s Story - Community and Acceptance

01 December 2023

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.

I only recently found out about Nerve Tumours UK from seeing the digital advertising campaign at London's Kings Cross train station, raising awareness on billboards across the concourse and on the escalators.

Travelling up the escalator and seeing the condition being advertised all the way up, was really empowering.

It was so positive and uplifting to see that there was a charity there for me, who was intent on raising awareness of the condition.

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.

"I have always supported inclusivity, team building and causes close to my heart. As you can see, NF never held me back, and seeing these adverts gave me a sense of community and acceptance. "

– David

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.

"If I had access to an NF specialist when recently seeking advice on removal of more complex neurofibromas, it would have made a huge difference to my experience. Not having access to specialist advice meant no one really knew to whom I should be referred."

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.

"Change the things you can change, accept the things you cannot, and have the wisdom to know the difference"

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.

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK