--- title: "Neurofibromatosis Orthodontics UK: NF1 Jaw and Teeth Guide" url: https://virtualconsultant.online/guides/neurofibromatosis-orthodontics-uk description: "NF1 neurofibromatosis affects the jaw, teeth, and facial skeleton in the UK — plexiform neurofibromas, skeletal involvement, sphenoid dysplasia." updated: 2026-09-01T00:00:00Z publisher: Virtual Consultant Online --- NF1 Jaw Asymmetry Complex Needs Skeletal Involvement # Neurofibromatosis and Orthodontics UK Neurofibromatosis type 1 (NF1) is a genetic condition that can cause benign nerve tumours, skin changes, and skeletal abnormalities — including significant involvement of the jaw and facial bones. This guide explains the oral and dental implications of NF1 and what patients in the UK should know when seeking orthodontic care. This page is for information only and does not replace advice from your medical or dental team. [Start Photo Assessment](https://virtualconsultant.online/evaluations/quote) [Compare Costs](https://virtualconsultant.online/costs) ## What is neurofibromatosis type 1 (NF1)? Neurofibromatosis type 1 is an autosomal dominant genetic condition caused by mutations in the NF1 gene on chromosome 17. It affects approximately 1 in 3,000 people in the UK and is characterised by café-au-lait macules (flat, pale brown skin patches), cutaneous neurofibromas (benign peripheral nerve tumours), axillary or inguinal freckling, and Lisch nodules of the iris. NF1 can also cause learning difficulties, scoliosis, plexiform neurofibromas, and bone dysplasia affecting the facial skeleton. The NHS NF1 pathway in the UK involves specialist multidisciplinary teams at regional centres, and dental and orthodontic needs may be managed as part of this coordinated approach. ## How do café-au-lait macules relate to NF1 and dental assessment? Café-au-lait macules are flat, evenly pigmented brown patches on the skin that are among the earliest and most consistent features of NF1. Having six or more café-au-lait spots of 1.5 cm or more in diameter in post-pubertal individuals is one of the diagnostic criteria for NF1. While café-au-lait macules do not affect the teeth or jaw directly, they are a visible marker of the underlying genetic condition that informs the level of medical and dental complexity a patient may have. Dental professionals should be aware that a patient presenting with multiple café-au-lait macules should be asked about their NF1 diagnosis and specialist team, as this influences the level of care coordination required. ## How do plexiform neurofibromas affect the jaw and facial region? Plexiform neurofibromas are diffuse tumours arising from multiple nerve fascicles and are among the most clinically significant complications of NF1. When they involve the trigeminal nerve branches — particularly the maxillary and mandibular divisions — they can infiltrate the soft tissues and bone of the face and jaw. Plexiform neurofibromas in the facial region can cause significant asymmetry, tissue overgrowth, displacement of the teeth and alveolus, and interference with normal dental development. They are generally not amenable to complete surgical removal because of their infiltrative nature and the risk of damaging the nerves they arise from. Orthodontic management in the presence of a facial plexiform neurofibroma requires coordination with the maxillofacial surgery team, and treatment must accommodate the tumour's impact on tissue architecture. ## What skeletal involvement does NF1 cause in the face and jaw? NF1 is associated with several forms of skeletal dysplasia that can involve the craniofacial skeleton. Sphenoid wing dysplasia — absence or underdevelopment of the greater wing of the sphenoid bone — is a characteristic finding on imaging in some NF1 patients and can be associated with pulsatile proptosis of the eye (due to direct contact between the brain and the orbital fat) and orbital asymmetry. Mandibular dysplasia can occur independently of plexiform neurofibroma involvement, producing jaw asymmetry, condylar irregularity, and altered occlusal relationships. Long bone pseudarthrosis — most commonly affecting the tibia — is also seen in NF1, and similar fibrous dysplasia-like changes have been described in the jaws. These skeletal abnormalities complicate orthodontic treatment planning and may require surgical input before or alongside orthodontics. ## What treatment challenges arise in NF1 orthodontic care? Orthodontic treatment for patients with NF1 often requires more appointments, longer treatment timescales, and more frequent monitoring than standard orthodontic cases. Asymmetric jaw growth due to NF1 skeletal involvement may mean that tooth positions change during treatment as the jaw continues to develop differently on each side. Plexiform neurofibromas near the dental arch complicate appliance placement and may make traditional bonding of brackets onto certain teeth impractical. Healing and tissue response may be affected if the patient is receiving medical treatment for their NF1, including MEK inhibitor therapy (such as selumetinib, which is now approved in the UK for certain NF1 patients with plexiform neurofibromas). Medication interactions with local anaesthetics and sedation agents should be discussed with the patient's medical team before any dental procedure. ## What is the NHS pathway for complex NF1 dental and orthodontic needs? In the UK, patients with NF1 are typically managed through specialist NF1 clinics at regional centres, which include paediatric neurology, clinical genetics, dermatology, and ophthalmology. Dental and orthodontic needs may be coordinated through the regional maxillofacial unit or hospital dental department. Patients with significant jaw or facial involvement from NF1 are referred to consultant orthodontists and oral and maxillofacial surgeons, often as part of a combined clinic. NHS funding for orthodontic treatment follows the same IOTN criteria as for other patients, but the complexity of care usually means treatment is delivered in a hospital or community dental service setting rather than a primary care specialist practice. ## What should NF1 patients tell their orthodontist? NF1 patients attending an orthodontic consultation should bring information about their specialist team, including the name and contact details of their NF1 clinic consultant. They should disclose any medications they are taking, particularly MEK inhibitors or other systemic treatments, and any recent imaging of the face or jaw. They should explain the location and extent of any plexiform neurofibromas, particularly if these are near the face, jaw, or oral cavity. Any history of surgical procedures to the jaw or face should be disclosed, along with any learning or communication support needs that may affect appointment planning and consent. Early communication of these details allows the orthodontist to plan appointments and consult with the NF1 specialist team before treatment begins. ## Useful related pages [Crouzon Syndrome and Orthodontics UK](https://virtualconsultant.online/guides/crouzon-syndrome-orthodontics-uk) [Down Syndrome and Orthodontics UK](https://virtualconsultant.online/guides/down-syndrome-orthodontics-uk) [Apert Syndrome and Orthodontics UK](https://virtualconsultant.online/guides/apert-syndrome-orthodontics-uk) [Prader-Willi Syndrome and Orthodontics UK](https://virtualconsultant.online/guides/prader-willi-syndrome-orthodontics-uk) [Get a Quote from Virtual Consultant Online](https://virtualconsultant.online/evaluations/quote) This guide is for general information only. It is not a diagnosis, treatment plan, or substitute for advice from a registered dentist or orthodontist. ### Compare next steps [Orthodontist Near Me](https://virtualconsultant.online/locations/orthodontic-treatment-near-me) [Clear Aligners Near Me](https://virtualconsultant.online/treatments/clear-aligners-near-me) [Invisalign Near Me](https://virtualconsultant.online/locations/invisalign-provider-near-me) [Browse Locations](https://virtualconsultant.online/locations) ### Ready for a clearer starting point? Upload guided photos and receive an indication of likely treatment options and pricing before booking appointments. [Get an Online Quote](https://virtualconsultant.online/evaluations/quote) ### Frequently Asked Questions Can people with NF1 have orthodontic treatment? Yes. Many people with neurofibromatosis type 1 can have orthodontic treatment, though the approach needs to be adapted to the individual's specific involvement. The presence of facial plexiform neurofibromas, jaw asymmetry, or skeletal dysplasia means treatment is often delivered in a hospital or specialist setting with coordination between the orthodontist, maxillofacial surgeon, and the patient's NF1 specialist team. The level of complexity varies considerably between patients, and early consultation allows an appropriate treatment plan to be developed. Does NF1 cause jaw problems? Yes, NF1 can affect the jaw in several ways. Plexiform neurofibromas involving the facial nerve branches can infiltrate jaw soft tissues and bone, causing asymmetry and displacing teeth. Mandibular dysplasia and condylar irregularity can occur independently, producing a skewed jaw relationship and altered bite. Sphenoid wing dysplasia can contribute to orbital and facial asymmetry. The extent of jaw involvement varies considerably between individuals with NF1 and should be evaluated by a consultant orthodontist or maxillofacial surgeon with experience of the condition. Does MEK inhibitor therapy for NF1 affect dental treatment? Selumetinib (a MEK inhibitor approved in the UK for children with NF1 and inoperable plexiform neurofibromas) and other systemic treatments for NF1 may have implications for dental and orthodontic management. Potential interactions with local anaesthetics, sedation, or surgical healing should be discussed with the patient's medical team before any procedure. Dental professionals should request an up-to-date medications list from the patient's NF1 specialist and seek advice from the clinical pharmacist or prescribing physician if they are uncertain about interactions. What is sphenoid wing dysplasia and how does it affect orthodontics? Sphenoid wing dysplasia is the absence or underdevelopment of the greater wing of the sphenoid bone — a bone that forms part of the orbit and the skull base. It is a recognised feature of NF1 and can be associated with orbital asymmetry, proptosis (eye protrusion), and pulsatile enophthalmos. In the context of orthodontics, sphenoid wing dysplasia does not directly affect tooth movement but contributes to the overall craniofacial asymmetry that influences facial aesthetics and jaw relationships. Imaging findings of sphenoid wing dysplasia on routine X-rays should be flagged to the patient's NF1 team if not already known. Is orthodontic treatment funded by the NHS for NF1 patients? NHS funding for orthodontic treatment for NF1 patients follows the same IOTN criteria that apply to all patients — grade 3.6 or above qualifies eligible under-18s for treatment. Because NF1 can cause significant malocclusion, asymmetry, and functional problems, many patients with NF1-related dental and jaw involvement will score at IOTN grade 4 or 5, qualifying for NHS-funded treatment. Treatment is typically delivered in a secondary care or hospital setting rather than primary care, reflecting the complexity of the case. Adults with NF1-related jaw problems may be eligible for NHS treatment if surgical correction is required, through the consultant orthodontist and OMFS pathway. How does facial asymmetry from NF1 affect orthodontic treatment planning? Facial asymmetry from NF1 — whether caused by plexiform neurofibroma, mandibular dysplasia, or skeletal involvement — means that conventional orthodontic goals (symmetrical arch form, centred midlines, even bite) may not be fully achievable without surgical correction. Orthodontic treatment in these cases often focuses on optimising tooth alignment within the constraints of the asymmetric jaw, preparing for surgical correction if the patient is suitable and willing, or managing function and aesthetics as effectively as possible without surgery. The treatment plan must be developed in full knowledge of the NF1 involvement and discussed honestly with the patient and their family. Where can UK patients with NF1 get support for their dental needs? In the UK, patients with NF1 should be linked to a regional NF1 specialist team through their GP or paediatrician. The Neuro Foundation (nfauk.org) is a UK charity that provides information, support, and a community for people with NF1 and their families. The NHS NF1 pathway can coordinate referrals to hospital dental and orthodontic services for patients with complex needs. 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Upload guided photos and get a tailored recommendation for your teeth and bite. [Start Photo Assessment](https://virtualconsultant.online/evaluations/quote) [Find an Orthodontist](https://virtualconsultant.online/locations) Citation details Title Neurofibromatosis Orthodontics UK: NF1 Jaw and Teeth Guide Publisher Virtual Consultant Online Published 2026-06-28 Updated 2026-09-01 URL [https://staging.virtualconsultant.online/guides/neurofibromatosis-orthodontics-uk](https://staging.virtualconsultant.online/guides/neurofibromatosis-orthodontics-uk)