Caring for a loved one
When looking after someone with NF1, there are some things that you can do to help manage the condition better. Here, we’ll provide you with some practical examples, explaining things you can do to support yourself and the person you’re caring for.

NF1 can be challenging for both the child and their caregiver, especially when PN are present.1,2 There are different ways to help children living with NF1 cope with the challenges of the condition, but it’s important to consult with healthcare professionals and find what works best for you and your family.
Here are some examples:
  • Creating daily routines – NF1 can cause uncertainty for both the child and their caregiver. Having a schedule may help some children living with NF1 feel more secure and provide a greater feeling of control and confidence3
  • Fun distractions – for some children, bringing distractions along to doctor’s appointments, such as books or games, could keep them preoccupied while they wait or help them cope with an invasive procedure4
  • Avoiding over-promising – being positive but realistic about what the doctor can do could help some children living with NF1 understand what’s to be expected about living with their condition5
  • Getting psychological support if you need it – this could include a speech and language therapist, an educational psychologist to help with learning, or an occupational therapist to help develop skills for daily activities6
  • Exploring NF1 – tailored mind–body programmes – these have been developed to alleviate stress and improve quality of life, although the programmes are in their infancy.7 Current evidence suggests these programmes improve physical, psychological, social and environmental quality of life7
  • Giving more control as they get older – being more active in their own care could help some teenagers build confidence. This could involve encouraging them to ask questions and directly address any concerns in their doctor’s appointments, to help ‘own’ their condition with a caregiver’s support8

  • Making their teachers aware – in a school setting, children with NF1 could become a target of bullying, so it may be beneficial for their teacher to implement a general discussion in the classroom about ‘what makes us the same and what makes us different’.9 This will provide an opportunity to explore general themes without specifically mentioning NF1, but could allow the child to explain NF1 as ‘something I was just born with’.9 This could prevent the child feeling singled out and create an environment where other children can speak about their differences too9
  • Making doctor’s appointments more comfortable – outlining what will likely happen in the appointment beforehand could be helpful for some children, as it may make the situation feel more familiar. Validating the child’s feelings about visiting the doctor’s may also be beneficial.5 Appointments can be scary, but that’s okay!
  • Connect with other children with NF1 – through your doctor or by reaching out to patient support networks – connecting with others living with NF1 can provide emotional and moral support for individuals and a sense of community10
It can be tough looking after someone with NF1. If you’re a caregiver, it’s only natural you’ll want to do everything you can to help your child. But you can only do this effectively when you’re in a good place yourself.

It’s important that carers take some time out every now and then and seek support if needed. Here are examples that some caregivers may use to help limit their stress levels and look after their well-being:

  • Maintaining other relationships – looking after someone with NF1 can have an impact on other relationships. Whether it’s friends or family members, keeping in touch and staying close may help to develop a support bubble11
  • Caregivers can speak to a doctor too – they’re not just for appointments with your child. Speaking to someone could help with working through your own worries and stresses too11
  • Take advantage of the various mental health resources out there – caregivers shouldn’t delay in using them if they feel they need it. Speak to your doctor to find out what support is available for you11
Discover patient support groups
 NF1 resources Heaney A et al. A qualitative study of the impact of plexiform neurofibromas on need fulfilment in adults with neurofibromatosis type 1. SAGE Open Med 2019;7:2050312119829680. Yang X et al. Burden Among Caregivers of Pediatric Patients with Neurofibromatosis Type 1 (NF1) and Plexiform Neurofibroma (PN) in the United States: A Cross-Sectional Study. Neurol Ther 2022;11:1221–1233. Children’s Tumor Foundation. The NF Parent Guidebook. https://www.ctf.org/images/uploads/NF_Parent_Guidebook_CTF_web.pdf Last accessed: September 2023. Great Ormond Street Hospital for Children. Distraction: information for families. https://www.gosh.nhs.uk/documents/11556/Distraction_F0617_FINAL_Jun20.pdf Last accessed: September 2023. Nerve Tumours UK. Talking with Children about Neurofibromatosis. https://nervetumours.org.uk/images/downloads/Talking_with_children_about_Neurofibromatosis_v1.pdf Last accessed: September 2023. NHS. Neurofibromatosis type 1 treatment. https://www.nhs.uk/conditions/neurofibromatosis-type-1/treatment/ Last accessed: September 2023. Wei G et al. Impact of mind‐body treatment interventions on quality of life in neurofibromatosis patients: A systematic review and meta‐analysis. Dermatol Ther 2021;34:e14613. NF Collective. Transitioning to adult care. https://www.cancer.gov/pediatric-adult-rare-tumor/support/transitioningtoadultcare Last accessed: September 2023. Nerve Tumours UK. Supporting a student who has Neurofibromatosis Type 1 (NF1). https://nervetumours.org.uk/images/downloads/NTUK_Support_for_Teachers_NF1.pdf Last accessed: September 2023. Nori M et al. The global role of patients, advocates and caregivers in rare diseases. Future Rare Dis 2023;2:FRD22. Kenny T et al. The importance of psychological support for parents and caregivers of children with a rare disease at diagnosis. Rare Dis Orphan Drugs 2022;1:7.