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Neurofibromatosis is a genetic disorder that causes small non-cancerous tumours to grow on the tissue of the nervous system. It can have many varied effects that can cause problems from childhood up to adulthood, but many of these symptoms can be helped by physiotherapy.
Neurofibromatosis is a disorder in which tumours grow on the tissue of the nervous system. The tumours are called neurofibromas and tend to be non-cancerous, but can compress nerves and cause many varied complications.
Neurofibromatosis is caused by a mutation in the genes. Around 50% of Neurofibromatosis cases are inherited from the parents, and the other half are spontaneous genetic mutations that happen for no known reason in the developing foetus. You are born with Neurofibromatosis and its symptoms can present from childhood into adulthood.
There are two types of Neurofibromatosis, and they have completely separate causes and symptoms:
Neurofibromatosis Type 1
Neurofibromatosis Type 1 can also be called von Recklinghausen disease or abbreviated to NF1. It is the most common form and affects 1 in 3000.
One of the main effects of Neurofibromatosis Type 1 is discolouration of the skin (coffee-coloured patches that are also called caf au lait spots) or the development of the neurofibromas (tumours) under the skin causing small raised bumps. The condition can also cause high blood pressure, affect the way the skeleton is formed and developed, or in a small percentage of cases lead to a type of malignant cancer called Malignant Peripheral Nerve Sheath Tumours.
Neurofibromatosis Type 2
Neurofibromatosis Type 2 (NF2) is a rarer form of the disorder, affecting 1 in 25,000.
The main characteristic of NF2 is that the tumours grow on the nerves that are related to balance and hearing. This can result in ringing in the ears (tinnitus), gradual hearing loss that could result in complete deafness, and problems with balance.
The causes and symptoms of each type of Neurofibromatosis are completely separate and their effects are very varied. Some of the effects of Neurofibromatosis can be helped with physiotherapy. To talk to one of our specialist physiotherapists or arrange an appointment email
The effects of both types of Neurofibromatosis are very varied and unpredictable. Some of the effects require specialist medical treatment or surgery. However, many of the effects of Neurofibromatosis can be helped with physiotherapy.
In Neurofibromatosis type 1 (NF1) the effects that can be addressed by physiotherapy include:
Physiotherapy treatment for Neurofibromatosis will very much depend on what symptoms or problems you or your child need help with.
For children, our specialist paediatric physiotherapists would carry out an in depth assessment, check your childs developmental milestones and look for any areas of muscle weakness or tightness. Our paediatric physiotherapists use a variety of techniques involving play to engage your child in their therapy and make it as fun and enjoyable as possible.
For adult patients you would be seen by one of our specialist neurological physiotherapists, who would carry out a full physical assessment looking at muscle strength and length, as well as your balance and mobility. Your physiotherapist would also have an in-depth talk with you about how your symptoms affect your everyday function and what goals you would like to achieve with therapy.
Your physiotherapist can also work alongside speech and language therapists, or occupational therapists where applicable, in order to maximise the benefits of your therapy.
At Liverpool Neuro Physio we aim to understand not just your particular symptoms of neurofibromatosis, but how they impact on you or your childs life. As neurofibromatosis can be such a varied condition, our physiotherapists are able to assess and adapt their treatment to your specific problems. Physiotherapy treatment would be centred around you and your specific needs. Our physiotherapists will work to help you achieve your personal goals, whether they are to improve your balance or mobility, or help your child achieve their developmental milestones.