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Support for Employers (NF2)

Nerve Tumours UK is here to give you the knowledge and guidance so you can support people with NF2 in your workplace.

What is Neurofibromatosis Type 2?

Neurofibromatosis Type 2 (NF2) a rare genetic condition caused by a “misspelling” on chromosome 22. NF2 occurs in 1 in 30,000 of the population. 

NF2 is the development of benign tumours which grow on both hearing nerves. It is rare. People will have lumps growing in their brain and spine. People diagnosed with NF2 will need operations or other treatments for brain or spinal cord tumours. 

What are the symptoms?

The misprinted gene will be present at birth, but signs of the condition do not usually appear until the teenage years, twenties or later.

Most NF2 tumours are slow-growing and may cause minimal problems for years. Although they are not malignant (not cancerous) their position may produce significant symptoms. For the majority of people, the most common first symptoms of NF2 are:

  • Gradual hearing loss 
  • Tinnitus (ringing or roaring in the ears)  
  • Unsteadiness, particularly when walking on uneven ground or in the dark. 

These symptoms are caused by tumours on the hearing nerves (vestibular schwannomas). Other symptoms may relate directly to the pressure caused by tumours on the spine or on the lining of the brain. For example:

  • Headaches 
  • Change in vision  
  • Change in sensation, pain or weakness of an arm or leg.

What problems can occur at work?

People with NF2 may have:

  • Balance difficulties
  • Sight problems 
  • Be sensitive to bright light
  • Be subject to workplace bullying 

Examples of how to help

Identifying strengths and weaknesses is a starting point. Your employee has lived with Neurofibromatosis all their life and will know what they can do… and what they find difficult.

It is likely that your employee will have some problems with their hearing. They may have become deaf and have no hearing at all, relying on lip-reading skills. It is important to take account of this especially when speaking. 

Hearing 

  • Shouting will not help! Speak clearly and ensure your face can be seen by the person who is hearing impaired. 
  • Try not to turn your head away or cover your mouth. This will help the person to lip-read and improve communication.
  • Ensure seating is appropriate and ask for advice from your employee about what position helps them most. Remind attendees at meetings to face the person with hearing difficulty. 
  • A round table may be most helpful. In meetings, ask people to speak one at a time. Ask the Chair to repeat questions as they are asked to help focus the meeting and to clarify the subject under discussion. 
  • Ask for deaf awareness training for all staff. There will be contacts locally. 
  • Delegate some tasks to other hearing members of the team. Use a colleague to support the hearing-impaired employee if needed. 

Balance 

  • If your employee has balance difficulties, ensure lighting is good and minimise trip hazards. 
  • Ensure safety at all times, especially if tannoy announcements are used to alert staff.

 Practical advice about hearing loss support in the workplace please look at:

www.actiononhearingloss.org.uk 
www.hearinglink.org 

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