Helpline 07939 046 030
Freephone 0300 102 17 22*

Megan’s Story

28 May 2020

My name is Megan. I'm 19 and I was diagnosed with NF1 and mild Scoliosis when I was 11. My NF1 was discovered when I was seeing my paediatrician for something completely different. I'm forever greatful to him for knowing about the condition and recognising it as otherwise, I still may not have known about it to this day. 

Since my diagnosis, they've discovered through MRI scans some fibromas in my brain, which are being closely monitored by the amazing neurosurgery team at The Queen Elizabeth hospital. I'm always grateful for everything my doctors have done for me- they've kept me informed, reassured me and made sure that everything was explained to me in regards to treatment options.

Despite my NF1, I am living life to the full and doing the things that I love. I have a scary acting job, I'm studying to be a children's nurse and I'm making the best out of every day. NF1 is a part of who I am, but it doesn't define or control me and I hope that one day we will #EndNF

Filter News

Search by keyword
Filter by Date
Category
Reset

Alex’s NF1 story

Alex describes her life with NF1, growing up in care, doing adaptive boxing & gym classes & getting NCFE Care qualifications

Read More

Sumeeth’s Schwannoma story

Sumeeth, thought nothing of a muscle twitch after a hangover - it was the first symptom that led to a Schwannoma diagnosis

Read More

Laura’s NF1 story

Laura is doing a skydive fundraiser to raise awareness & funds for NTUK, after her daughter was diagnosed with NF1

Read More

Disfigurement equality at work - research

This research study by Queen Mary University, London, aims to improve workplace equality for people with disfigurements

Read More

RAISING THE ROOF: CHARITY COMEDY NIGHT IN AID OF NERVE TUMOURS UK

Join us in London on our first comedy night to celebrate 40 years of Nerve Tumours UK

Read More

NF1 stem cell research study

Julieta is carrying out stem cell research to understand brain development in those with NF1

Read More

Ava-Lily’s NF1 story

Ava-Lily is thriving at school despite various NF1 related difficulties - read her story

Read More

Westminster Virtual Rare Disease Day 2022 Reception

NTUK joined the annual international event aimed at raising awareness & highlighting the needs of people with rare diseases

Read More

Rare Disease Day 2022

Nerve Tumours UK joins events showcasing Rare Disease Day, hosted by the Genetic Alliance, on 28 February 2022

Read More

Registered Charity Number: 1078790 and SC045051

Nerve Tumours UK has taken reasonable care to ensure that the information contained on this website and in its newsletters, literature is accurate. Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date. Any information given is not a substitute for getting appropriate medical advice from your own GP or other healthcare professional.

Website by Optima.

Masterclasses in NF: Ophthalmologic Findings & Orthopic Eye Examination in NF1 and NF2-Related Schwannomatosis

Ophthalmologic Findings & Orthopic Eye Examination in NF1 and NF2-Related Schwannomatosis

Prof. Dr. Berthold Pemp

OT Sabine Koinig

Masterclasses in NF: Plexiform Neurofibromas in NF1 - General Course and Neuroradiology

Plexiform Neurofibromas in NF1 - General Course and Neuroradiology

Assoc. Prof. Dr. Gregor Kasprian

Dr. Hector Salvador, MD

Masterclasses in NF: The Patients’ Perspective: A Masterclass on NF Care Held by NF Patients

Masterclasses in NF: Treatment Strategies for Vestibular Schwannomas: When to Treat? How to Treat?

Treatment Strategies for Vestibular Schwannomas: When to Treat? How to Treat?

 

Michel Kalamarides MD

Masterclasses in NF: Management Of Plexiform Neurofibromatosis in NF1- Rianne Oosterbrink, Justus L Groen, Karine Lascelles

Masterclasses in NF1: 1.Management Of Plexiform Neurofibromatosis in NF1

Rianne Oosterbrink MD

Justus L Groen MD

Karine Lascelles MD

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