Accessibility Tool

banner

Meet your Healthcare Team1

If you have NF-1, you probably will spend time at the hospital getting to know all the doctors and
nurses who want to help look after you. Your doctors and nurses know lots about NF-1, and they will
look forward to helping you grow up healthy and strong.

These people are your healthcare team. It is their job to look after you and make sure you have the
tests and medicines you need to keep you feeling as well as you can. Because neurofibromatosis
type-1 (NF-1) is such a complex condition, with a wide variety of signs and symptoms, your child will
be cared for by several different specialists. This multidisciplinary healthcare team is there to
provide whole-family support. It can be difficult to keep track of everyone in your child’s healthcare
team, so we’ve put together a list of the different medical experts who might be involved.

4 people
Neurologists
Neurologists
Geneticists
Surgeons
Ophthalmologists
Physiotherapists
Neuropsychiatrists
Radiologists
Oncologists

Neurologists1

Neurologists assess the function of your child’s nerves. Changes to senses such as touch or sight can be an early warning sign that more serious symptoms of NF-1 are beginning to appear. Likewise, persistent headaches or loss of motor control should be investigated urgently.2

Neurologist figure

Neurologists1

Neurologists assess the function of your child’s nerves. Changes to senses such as touch or sight can be an early warning sign that more serious symptoms of NF-1 are beginning to appear. Likewise, persistent headaches or loss of motor control should be investigated urgently.2

References:

  1. Ferner RE, Huson SM, Thomas N, et al. Guidelines for the diagnosis and management of individuals with neurofibromatosis 1. J Med Genet. 2007;44(2):81-8
  2. Ejerskov C, Raundahl M, Gregersen PA, et al. Clinical features and disease severity in patients with mosaic neurofibromatosis type 1: a single-center study and literature review. Orphanet J Rare Dis. 2021;16(1):180.
  3. NHS UK. Neurofibromatosis type 1. Available at: www.nhs.uk/conditions/neurofibromatosis-type-1. Last accessed February 2023.
  4. Patient.info. X-ray test. Available at: https://patient.info/treatment-medication/x-ray-test. Last accessed February 2023.
  5. Patient.info. MRI scan. Available at: https://patient.info/treatment-medication/mri-scan. Last accessed February 2023.