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Supporting children, young adults and their families up to the age of 30

Supporting children, young adults and their families up to the age of 30

Transition from Paediatrics

While under paediatric care you likely had a paediatrician who was your main point of contact – someone you saw regularly, often annually, who coordinated your care with other specialists, such as neurologists, dermatologists, and genetic counsellors. This paediatrician ensured everyone was on the same page regarding your health and treatment plan, making the process simpler and more streamlined.
As you move into adult healthcare, you may no longer have a single person overseeing all aspects of your care. Coordinating your healthcare is often down to you. This shift can feel challenging at first, as you now need to manage appointments with multiple specialists, keep track of your own medical records, and communicate your health needs to different doctors. But with the right tools and support, you can take control of your care and feel confident in managing each step. As NF1 affects everyone in different ways your care will be different to someone else with NF1, the important thing is to know what you should be doing.

Make sure you are familiar with the NF1 Review Checklist for adults (16+) and refer to them to ensure you are receiving the right care at the right time. Please note that these guidelines may change as updates become available

“Explore the challenges and triumphs of growing up with NF1 by watching the trailer for ‘Hedgehog’, a coming-of-age film by Shanty Productions, with the full release coming next year.”

Know your medical history

Understanding NF1 and your health: It’s important to know how NF1 affects you personally, including any treatments you’ve had and the symptoms you may experience. Knowing your medical history can help you explain your condition to new doctors and advocate for the care you need.

Key documents: Keep a summary of your health history, including surgeries, medications, test results, and allergies. Having these on hand will help you and your healthcare team make informed decisions.

Understand your medications and treatments

Know your medication: If you take medications for NF1 or related symptoms, make sure you understand what each one does, how often to take it, and any potential side effects. Keeping a list of your medications can be helpful if you need to discuss them with a healthcare provider.

Treatment options and choices: As you age, you may have new treatments available. Knowing what options exist and understanding their benefits and risks helps you make decisions with your doctor.

Keep your personal information organised

Medical records and insurance: Keep copies of important documents, like insurance information, ID and healthcare records. This is particularly useful if you see multiple specialists or need to access care in new locations.

Appointment scheduling and follow-ups: As an adult, you’ll likely be responsible for booking your own appointments and remembering follow-ups. A planner, app, or digital reminder system can help you stay organised and ensure you never miss a critical check-up.

Family Planning

If you are considering starting a family, it is important to understand the options available to you. Speak with a healthcare professional or genetic counselor to discuss how NF1 might affect pregnancy and the chances of passing the condition to your child. They can provide guidance tailored to your situation and help you make informed decisions.

Build a relationship with your new healthcare team

Know who’s on your team: Your adult healthcare team may include specialists in genetics, dermatology, neurology, ophthalmology, and more. Each professional plays a unique role in helping manage different aspects of NF1. These may be in the same hospital or across many different ones. You may not be under any specialists and will need to discuss your care with your GP.

Schedule regular check-ups: Even if you’re feeling well, routine appointments are essential to monitor changes or symptoms, as NF1 can evolve over time. Setting up a regular check-up schedule keeps your care on track.

Recognise important symptoms and when to seek help

Identify signs and symptoms: Learn which symptoms are typical for NF1 and which might indicate it’s time to check in with a doctor. Pain, changes in vision, or new growths are examples of symptoms that should be evaluated.

Know where to go for help: In an emergency, know where to go, whether it’s a local hospital, a specialist, or an NF1 clinic. Having contact information for your healthcare team and emergency services can give you peace of mind.

Get support when you need it

Lean on support networks: Managing your health can feel like a lot at first. Talking to friends, family and support groups like the Childhood Tumour Trust Facebook Group can make it easier. Peer connections and counsellors are great resources for navigating both physical and emotional challenges.

Seek mental health support: Dealing with a lifelong condition can sometimes feel overwhelming. Don’t hesitate to seek out counselling or mental health support, whether through our Rare Minds partnership or your local health service.

Breast Cancer

While 30 may seem a long way off, it’s important to be aware that women with NF1 have an increased risk of breast cancer starting at age 30. Being informed early can help you take proactive steps for monitoring and care. For more details visit our Breast Cancer Awareness section and watch this video.

Transitioning to managing your own health is a big step, but with the right information and support, you’re more than capable of handling it.