You’re probably here because your child or teenager is living with NF1 PN. They may have just been diagnosed, or maybe they have already started their treatment. NF1 is a rare genetic condition that causes tumours (usually benign), known as PNs, to grow along nerves.1,2,5 These can result in a range of symptoms, including skin discolouration, clusters of freckles and problems with bones, eyes and the nervous system.3
This website aims to help you understand NF1 PN, monitor the symptoms, and reassure you and your child that there are ways to help manage NF1 PN. Remember, you’re not taking this journey alone.
This website aims to help you understand NF1 PN, monitor the symptoms, and reassure you and your child that there are ways to help manage NF1 PN. Remember, you’re not taking this journey alone.
Plexiform neurofibromas, also known as PNs, are common and appear in approximately 30–50% of people living with NF1.4,5 PNs are abnormal growths of cells along nerves, and can occur anywhere in the body.5 The growths are usually non-cancerous (benign) but they can cause a range of symptoms.4,5,11 In rare cases, PNs can become cancerous (malignant).8
Identifying PNs
PNs aren’t always easy to notice in children with NF1. Sometimes they’re located deep inside the body, meaning they can’t be seen.8,11 In other cases, they may be recognized by associated skin discolouration or a bump under the skin.9
- Visible changes to the overlying skin such as thickened, orange-peel-like areas, discolouration, or associated hairy patches
- Pain
- Numbness
- Muscle weakness
- Reduced vision
- Bladder control issues
- Bowel issues, including severe constipation
- Limited movement because of the pain and other symptoms, which may also restrict hobbies and interests
Detecting PNs early makes managing and treating them easier.4,10
Use the Symptom Tracker to monitor your child's symptoms and share them with your doctor
Keeping a close watch on your child’s symptoms is crucial for early detection and while being treated for plexiform neurofibromas (PNs).4,10
Monitor your child’s symptoms by completing this checklist on a regular basis. Download it and bring it with you to your child’s next appointment so you can let their doctor know about any changes in their symptoms. Include notes about the severity and impact of your child’s NF1 PN symptoms over time. Remember, every child will experience something different.
Monitor your child’s symptoms by completing this checklist on a regular basis. Download it and bring it with you to your child’s next appointment so you can let their doctor know about any changes in their symptoms. Include notes about the severity and impact of your child’s NF1 PN symptoms over time. Remember, every child will experience something different.
Stay on top of your child or teenager’s symptoms with Calendar Reminders!
Add a reminder to your calendar to ensure you're prompted every six months to update the symptom tracker. This will help you and your child’s healthcare professional consistently monitor the progression of NF1 symptoms and provide the most up-to-date information for your discussions.
Living with neurofibromatosis 1 (NF1) can be challenging for the entire family. Plexiform neurofibromas (PNs) can impact day-to-day life, too. But it’s important to know you’re not alone; we’re here to provide you with information and resources to help support you and your loved one.
There is currently no cure for NF1 PN, but the condition can be managed. Treatment involves regular monitoring and managing any problems as they occur.12
Treatment may involve:
Early identification of PN can help your child’s healthcare provider dictate the best plan of action.4,10
They will determine if surgery or medication is recommended based on your child’s particular case and treatment plan.
They will determine if surgery or medication is recommended based on your child’s particular case and treatment plan.
PNs often don’t show any signs or symptoms8, but in some cases, they can affect your child’s life in different ways, such as by:
There are different ways to help children living with NF1 PN cope with the challenges of their condition. It’s important to find what works best for you and your family. Here are some things you can try:
If you have any questions about the management, support or treatment of NF1 PN, speak to your doctor to learn more.
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. Here are some things caregivers can do to help limit their stress levels and look after their wellbeing:
