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Advice for Students with NF1, NF2-Schwannomatosis, and Schwannomotosis

08 October 2024

Karene Edme, Clinical Psychologist

Karine is a Clinical Psychologist with the NF2-related Schwannomatosis specialist service in Addenbrookes Cambridge University Hospital (one of 4 centres in the UK). Covering also the areas of Birmingham, Nottingham and Leicester. Karine has been in Addenbrookes for 7 years and 4 with the NF2 team.

"University life can be an exciting and fulfilling phase, but can also be stressful at times, so attending to your health and psychological well-being will be paramount"

Starting university is a time full of excitement and uncertainty for everyone in this new phase of life. You might be preparing to live away from home and your parents, in a new town and might be wondering about making friends and developing your social life.

For students with a lifelong health condition such as NF, it also brings many other important questions. These could range from ensuring you chose a course that will accommodate aspects of your NF; thinking about the ways to talk to your new peers, teachers and friends about your condition, incorporating your treatments into your busy university life, ensuring adaptations are made to your studying environment if required. As NF varies greatly in its expression for each individual, its impact on new students can range from yearly monitoring with no or minimal symptoms, or active regular treatments, or acquired disability (hearing/ sight/ mobility). University life can be an exciting and fulfilling phase, but can also be stressful at times, so attending to your health and psychological well-being will be paramount.

Here are some key points to consider:

  • Share with others and educate them about your NF  Although it might not be what you want to talk about with your new friends, we know that it can be helpful if friends know about your health. Friends may also tell you important aspects of their ownhealth and personal lives, so you can be supportive and also feel supported and heard.
  • Stay connected to others   You might find it hard to fit in with your peers as their preoccupations or points of interest might at first seem very far away from your own, or you might not be able to participate with them. Your health is an important part of you, but give your friends a chance to get to know your personality, humour, interests too and you will find your crowd.
  • Student support service   It is important that you contact them and let them know about your NF, so they can support you if you need to speak with someone about your feelings, need more time, have to reschedule a test, or request the extension of a deadline. Looking after yourself is important throughout your NF care journey, and your clinical team can help liaise with your University to make reasonable adjustments or adaptations that can support your learning and your life at university.
  • Wellbeing and mental health at University  Most young people cope well at University, but it is important to get timely help if you are experiencing anxiety or low mood and need support. University students often tell us that adapting to changes and coping with big feelings are part of their learning to function as independent adults. Your mental state affects your ability to engage with the world around you, the way you think and feel, as well as how you behave. Your psychological well-being and safety matters so do more of the things that make you feel calmer, happier, healthier and secure. Colleges can offer counselling and speak with NF clinical nurse specialist or psychologist if you have any health worries. Your GP can refer you to specialist mental health support. National charities and support groups are also a great source of advice and support.

"Your GP can refer you to specialist mental health support. National charities and support groups are also a great source of advice and support."

Carolyn Smyth, Specialist Nurse, NF Advisor NTUK (Nerve Tumours UK)

"Further education is a completely different experience and environment to school and coping with so many changes can be very difficult for a news student."

“Over the years I have arranged to liaise with the Student Support Centre of Further Education Institutions such as Universities and Colleges of Further Education. I have always been pleasantly surprised by the help and support provided.The desire to understand the difficulties experienced by a student with NF1 or NF2 and help put in place support. Further education is a completely different experience and environment to school and coping with so many changes can be very difficult for a new student.

Typically when I am contacted by a parent or student with regard to help. I will arrange to speak to them in person if they live nearby, by telephone or set up a virtual meeting to discuss how their condition affects them specifically. As we know everyone is affected differently.

If the student is happy to include a parent in the discussion, that is fine too. We discuss their main causes of concern and try to get an insight into what issues are problematic for them. For example It may be Autism, ADHD (Both of which are prevalent in NF1). Other common issues are short term memory problems, poor organisational skills and difficulties with concentration. We can also include any medical / physical information (if appropriate) associated with their condition that they may wish to discuss. The student can choose to be
present or not at this meeting depending on their preference and of course if not I will feedback everything that has been discussed. I would like to encourage anyone considering
College or University as their next step to think about talking to the Student Support Centre and ask for help from Nerve Tumours UK if they need support with this.”

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