Whole body

What It Is

Neurofibromatosis (NF) is a group of genetic conditions in which tumours grow on the nerves. It can affect a number of different parts of the body, such as the skin, bones, eyes and brain (NHS, 2025a; National Institute of Neurological Disorders and Stroke, 2026). Most of the tumours are non-cancerous (benign), although some may become cancerous (National Institute of Neurological Disorders and Stroke, 2026). They can grow on nerves within the body, as well as on and under the skin (NHS, 2025a).

The condition can cause skin changes, bone problems and a range of other problems. In neurofibromatosis type 1 (NF1), many of the symptoms are there from birth or start during early childhood, but some do not appear until later (NHS, 2025a). Some people have mild symptoms, while for others the condition causes serious problems (NHS, 2025a). It's a genetic condition: if a parent has NF1 or NF2, each of their children has a 1 in 2 (50%) chance of inheriting it (NHS, 2025a; NHS, 2025b). However, about half of people with NF develop it because of a new (spontaneous) change in the gene, and other family members are not affected (National Institute of Neurological Disorders and Stroke, 2026).

NF1 can show up as light brown patches on the skin (café-au-lait spots), freckles in the armpits or groin, lumps on or under the skin (neurofibromas), a tumour on the nerve to the eye (optic nerve), or a curved spine (scoliosis). Children with NF1 often have learning difficulties (NHS, 2025a).

Even though there isn’t a cure, treatment can help manage the symptoms and any complications (NHS, 2025a). People with more severe symptoms need more medical attention than those with mild symptoms. NF1 and NF2 are lifelong conditions that usually get worse over time (NHS, 2025a; NHS, 2025b), so regular check-ups are important.

Neurofibromatosis Types

Type 1 (NF1): tumours called neurofibromas grow on the nerves and skin. While NF1 is rare, it is the most common type of neurofibromatosis (NHS, 2025a; National Institute of Neurological Disorders and Stroke, 2026).

Type 2 (NF2): now also called NF2-related schwannomatosis. It is rarer than NF1. Non-cancerous tumours grow on nerves in the brain, inner ear and spinal cord, and most people get tumours on the nerve in the inner ear that is important for hearing and balance (NHS, 2025b; National Institute of Neurological Disorders and Stroke, 2026). This can cause hearing loss, ringing in the ears and balance problems (NHS, 2025b). Symptoms usually appear in the late teens or early twenties, although children can sometimes have symptoms (NHS, 2025b). NF2-related schwannomatosis affects roughly 1 in 28,000 to 1 in 40,000 babies born (Evans, Blakeley and Plotkin, 2025).

Other types of schwannomatosis: these are rarer forms, caused by changes in different genes from NF2, and are now classed separately from NF2 (Evans, Blakeley and Plotkin, 2025). They can be associated with long-term pain anywhere in the body (National Institute of Neurological Disorders and Stroke, 2026).

Get Medical Help

Call 911 or go to the emergency room at your nearest hospital if you or your child have a seizure (fit) for the first time, or weakness or numbness in the face or down one side of the body (NHS, 2025b).

Get an urgent appointment with your doctor if you or your child keep getting headaches that do not go away or are getting worse, keep feeling or being sick, or have blurred vision or vision loss (NHS, 2025a).

Not a diagnosis — for more information, contact me or another trusted healthcare provider.

Treatment

Self-Care & Treatment

How Neurofibromatosis Is Treated

You'll be supported by different specialists, which may include a brain specialist (neurologist), an eye specialist and a skin specialist, and children will also see a children's doctor (paediatrician) (NHS, 2025a). If the tumours are not causing any problems, your doctor may suggest waiting to see if any problems develop before starting treatment (NHS, 2025a). Always follow your specialist team's own advice.

Working alongside your specialist team, I can help with the aches, tight muscles and stiffness that can come with the condition, and with recovery after surgery once your team is happy. See the My Approach tab for how I work.

Treatments you may want to discuss with your family doctor, nurse practitioner or specialist team

Options outside my scope

Surgery: an operation to remove tumours that are at risk of causing problems (NHS, 2025a; NHS, 2025b).
Radiotherapy: a beam of radiation used to treat small tumours, or pieces of a larger tumour left after surgery (NHS, 2025a; NHS, 2025b).
Medicines: some medicines can stop tumours growing, such as selumetinib for children with NF1 whose plexiform neurofibromas are causing symptoms and cannot be removed by surgery, and a medicine for NF2 that can stop tumours growing and sometimes improve hearing (NHS, 2025b; National Institute of Neurological Disorders and Stroke, 2026).
Chemotherapy: medicine used mainly for tumours that affect the optic nerve or brain (gliomas), or for tumours that have become cancerous (National Institute of Neurological Disorders and Stroke, 2026).
Hearing support: hearing aids or a cochlear implant may help people with NF2 (NHS, 2025b).
Scoliosis treatment: a curved spine can sometimes be corrected with surgery or held steady with a brace fitted by the specialist team (National Institute of Neurological Disorders and Stroke, 2026).

How I can help (see the My Approach tab)

Gentle massage for aches and tight muscles, working around any lumps
Help with stiffness, scars and compensation after surgery, once your team is happy
Gentle strength and balance exercises

Tips

You or your child should have a check-up at least once a year so that any changes can be picked up early. Children with NF1 should have their eyes checked every year, and blood pressure should be checked every year (NHS, 2025a).
Family counselling, support groups and genetic counselling can help people with the condition and their families. Charities can also provide support and information (NHS, 2025a).
Some people with NF1 have depression, anxiety and low self-esteem, for example because of large tumours or tumours on the face (NHS, 2025a).
Many children and their parents struggle with feelings of anger, shock, sadness, guilt, confusion and anxiety.
People with NF1 almost always have more than six café-au-lait spots. These spots are not always present at birth and may appear more often over time (National Institute of Neurological Disorders and Stroke, 2026).
Some people show symptoms at birth, while others develop symptoms later in life (NHS, 2025a; NHS, 2025b).

Treatment

My Approach

Neurofibromatosis is managed by your specialist team. Massage doesn't treat the tumours or straighten a curved spine, but I can ease the aches, tight muscles and stiffness that come with it. After surgery, or during radiotherapy or chemotherapy, I need your team's okay before any hands-on treatment.

Please bring any X-ray or scan reports and notes from your medical team to your first visit. They're an important part of planning safe treatment for you.

I assess how you move, where you're sore or stiff, your balance, and the feeling and strength in your arms and legs.

Day to Day

Gentle massage for aches and tight muscles, working around lumps on or under the skin
Lighter pressure over any area with reduced feeling; at home, test water temperature with your hand first
Easing the tight, tired muscles that can come with a curved spine
Gentle strength and balance work, plus relaxation and breathing for stress

After Surgery

Once your team is happy, help with swelling, stiffness and the muscles that have been compensating
Scar work once the wound has healed, then a gradual return to strength at your team's pace

Parents can sit in, with their child's agreement, and I'll show you how to help your child at home. For a first seizure, or sudden weakness or numbness in the face or one side of the body, call 911 (see Get Medical Help).

What to Expect

Typical Course

Typical course: NF is lifelong, so care is ongoing alongside your specialist team's check-ups and plan. Most people come weekly at first, with a reassessment at about 4 to 6 weeks, then every few weeks. Expect aches and stiffness to ease gradually over several weeks; after surgery, recovery follows your surgeon's timeline.

What I Focus On

Working With Your Specialist Team

Gentle Massage

Working Around Lumps

Strength & Balance

Recovery After Surgery

Sources

References

NHS (2025a) Neurofibromatosis type 1 (NF1). Available at: https://www.nhs.uk/conditions/neurofibromatosis-type-1/ (Accessed: 7 October 2026).
NHS (2025b) Neurofibromatosis type 2 (NF2). Available at: https://www.nhs.uk/conditions/neurofibromatosis-type-2/ (Accessed: 7 October 2026).
National Institute of Neurological Disorders and Stroke (2026) Neurofibromatosis. Available at: https://www.ninds.nih.gov/health-information/disorders/neurofibromatosis (Accessed: 7 October 2026).
Evans, D.G., Blakeley, J.O. and Plotkin, S.R. (2025) 'History and clinical epidemiology of NF2-related schwannomatosis', Familial Cancer, 24(4), 79. doi: 10.1007/s10689-025-00504-5.

Massage therapy · Kitchener–WaterlooNeurofibromatosis

What It Is

Neurofibromatosis Types

Get Medical Help

Self-Care & Treatment

How Neurofibromatosis Is Treated

Treatments you may want to discuss with your family doctor, nurse practitioner or specialist team

Tips

My Approach

Day to Day

After Surgery

Typical Course

References

Related Conditions

Book a session

Massage therapy · Kitchener–WaterlooNeurofibromatosis

What It Is

Neurofibromatosis Types

Get Medical Help

Self-Care & Treatment

How Neurofibromatosis Is Treated

Treatments you may want to discuss with your family doctor, nurse practitioner or specialist team

Tips

My Approach

Day to Day

After Surgery

Typical Course

References

Related Conditions

Amyotrophic Lateral Sclerosis

Anterior Wedge Fracture to the Vertebra

Bone Tumor

Chronic Fatigue Syndrome

Book a session