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Disclosing and explaining visible differences - CAR Workshop

10 November 2023

The 'Disclosing and Explaining Visible Differences' workshop on Thursday 26th October 2023 was hosted by the VTCT Foundation team at the Centre for Appearance Research (CAR) based at the University of the West of England.

The workshop was led by Dr Kathleen Bogart, Associate Professor of Psychology at Oregon State University. As a person with a disability, Dr Bogart is passionate about researching, educating, and writing about ableism, or disability prejudice. Her research focuses on the psychosocial implications of living with disability, rare disorders, or facial differences such as Moebius syndrome.

Nerve Tumours UK was represented at the workshop by our Specialist NF Nurse Rebecca Rennison, who includes her reflections on the workshop, along with additional advice. 

Workshop Synopsis: People with visible differences are frequently expected by others to disclose or explain their appearance.  Research has shown that people use a range of disclosure approaches, some of which are associated with more positive psychosocial outcomes than others.

The interactive online workshop included an overview of studies that have been conducted by Dr Kathleen Bogart and the team at CAR, and discussions around ways to support people who might be facing this situation on a daily basis.

Understanding visible differences from an NF perspective  

What is a ‘disfigurement’, or a visible difference, that is impacting on me? Does my condition count?

  • ‘Disfigurement’ could include various conditions or injuries which affect your appearance. This might include scarring, birthmarks, limb or postural deformation (including restricted bodily development), diseases of the skin and other types of conditions. Whether someone has a disfigurement is decided on a case-by-case basis. What is important is not whether you’ve got a particular condition but how that condition appears in your case.
  • Unremoved tattoos and piercings for non-medical purposes are not disfigurements.
  • The visible effects of NF1, such as a plexiform tumour or a significant number of smaller skin tumours or café au lait marks could count as a disfigurement, but remember to consider whether it is ‘severe’. Remember also to consider whether any other possible features of NF1 (such as a learning difficulty, for example) could amount to a disability. 
  • The visible effects of NF2, such as a significant number of schwannomas could count as a disfigurement, but remember to consider whether it is ‘severe’. Remember also to consider whether any other possible features of NF2 (such as hearing loss, for example) could amount to a disability. 

How do I know if my disfigurement is ‘severe’?

Having any form of visible difference may affect an individual in various ways, and deciding whether a particular disfigurement is severe, involves weighing up several factors. 

The table below is for guidance.

According to the World Health Organisation, adolescence is the phase of life between childhood and adulthood, from the ages of 10 to 19. It is a unique stage of human development and an important time for laying the foundations of good health. Adolescents need age appropriate information and health services to grow and develop.

NF1 and NF2 are variable conditions that can lead to changes in an individual's appearance.

Appearance concerns are identified as a very important aspect of patient experiences. Changes in appearance have consistently been shown to have a detrimental effect on quality of life, social interaction, relationships and mental health.

Parents and young people with NF identified that thoughts and feelings about appearance related issues, plus experiences of social situations, can affect wellbeing and potentially impact future experiences of living with NF. 

The lack of knowledge of the condition can lead people to the internet to look at worst case scenarios.

How can we help?

  • Helping young people and parents talk about NF in a simple and positive manner.

  • We can help educate health professionals, who can play an integral role doing this, by talking to the young person about their appearance. 

  • Increased awareness and understanding about NF amongst schools, other healthcare professionals, and the general public.

  • School visits are invaluable, to ensure children with NF are supported appropriately, and the condition is understood.

The following will also help to reduce the stigma of a visible difference that may occur with NF.

  • Increased awareness and understanding of NF amongst professionals.

  • Ensure that young people have access to trusted information including online resources etc

  • Where to access psycho-social support. Check out our Support Resources section for further advice and guidance.

Please call our Helpline if you have any questions or would like to find out more about school visits.

The NTUK National Helpline is available on Monday, Wednesday and Friday 9am-5pm. Call 07939 046 030 or email https://nervetumours.org.uk/help/line.

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