Advice for students with NF1, NF2-related-Schwannomatosis, and Schwannomatosis

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, 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 minimal or no symptoms, to active regular treatments or an acquired disability (hearing/sight/mobility).

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 about important aspects of their own health 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 your 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.

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

Carolyn Smyth, Specialist NF Nurse, NTUK 

“Over the years I have arranged to liaise with the student support centres of further education institutions such as universities and colleges. 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 or 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 or 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 if they choose not to be present, I will feed back 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.”