Most NF1-PNs cannot be fully removed with surgery or other treatments. Therefore, it’s important to take steps to manage the condition and reach out to others for support as you enter adulthood.
Many people with neurofibromatosis type 1 (NF1) have at least one plexiform neurofibroma (PN), which may be present from birth or develop in early childhood. PNs are benign (noncancerous) tumors that can grow along nerves throughout your body.
Symptoms of neurofibromatosis type 1-associated plexiform neurofibromas (NF1-PN) depend on where the tumors develop but may include:
- visible lumps under your skin
- pain
- bleeding
- numbness
- weakness
- mobility issues
- bladder or bowel problems
Your symptoms and treatment options may change as you get older. Certain complications of NF1-PN are also more common in adults than in children.
The health effects and challenges of managing NF1-PN may also affect your:
- mental health or well-being
- social life and relationships
- schooling, work, and other activities
Although NF1-PN may affect your life in many ways, there are steps you can take to manage them. Read on to find tips and resources for managing NF1-PN as a young adult.
Getting more information about NF1 and PN may help you:
- recognize potential symptoms or complications that may develop
- understand your treatment options and strategies to stay healthy
- become more independent and confident in managing your condition
Here are some sources of information that may help you learn more:
You can also ask your doctor or other members of your healthcare team for information or support.
A neurologist or another specialist who has experience treating NF1-PN can help you manage your symptoms and understand what you may expect with the condition. They may also have up-to-date information about treatment options for NF1-PN or clinical trials that you can consider joining.
If you don’t have a specialist, consider asking your current doctor for a referral. You can also search for a specialist online through the Neurofibromatosis Network.
If there are no specialists near you, your primary care doctor may be able to consult with one by phone or online. This may help them get the information they need to provide effective treatment and support.
Regular checkups with your healthcare team are important for managing NF1-PN and other symptoms or complications of NF1.
Let your doctor know if you:
- develop new or worse symptoms
- have questions or concerns about treatment
- need more information or support
Your doctor may recommend changes to your treatment plan. They may also refer you to another healthcare specialist or to support services.
Consider using your phone or other tools to schedule reminders of important medical appointments.
You might find it helpful to ask a friend or family member to attend checkups with you.
Consider talking with your friend or family member before your appointment about any questions or concerns you want to discuss with your doctor.
This may help you mentally prepare for your appointment. And if you forget to mention an important question or concern to your doctor, your friend or family member may remind you.
Your friend or family member might also take notes during your appointment to help you remember important information or resources your doctor may share.
Most NF1-PNs are not cancerous, but they can sometimes change into a type of cancer known as a malignant peripheral nerve sheath tumor (MPNST).
MPNSTs are
Contact your doctor right away if you have a PN that is:
- getting larger more quickly than usual
- causing new or more severe symptoms
- changing texture
These might be signs that an NF1-PN has changed into an MPNST.
You should also let your doctor know about any other changes in your health.
Ask your doctor whether you should get screening tests or exams to check for health conditions that are more common in people with NF1, such as high blood pressure and breast cancer.
Your doctor can help you learn which screening tests to get and how often. This may help you get an early diagnosis and treatment if you develop certain health conditions.
While it’s possible to have a healthy pregnancy if you have NF1-PN, hormonal changes during pregnancy may cause an increase in PNs. However, a
People with NF1 have a 50% chance of passing the gene that causes NF1 to each child.
If you’re thinking about having children, consider asking your doctor for family planning support. They may share helpful information or refer you to a specialist such as a genetic counselor.
Living with a chronic condition such as NF1-PN can be challenging and stressful. It might negatively affect your sense of self, body image, or mental well-being.
You might develop symptoms of anxiety, depression, or another mental health condition.
Let your doctor know if you have concerns about your mental health or if you develop symptoms of a mental health condition, such as:
- changes to your mood or energy level
- frequent feelings of stress, sadness, irritation, anger, or hopelessness
- loss of interest in activities you usually enjoy
Your doctor may refer you to a mental health specialist for support. They may also prescribe medication to treat mental health symptoms.
Getting regular exercise is important for overall health and can also help manage specific symptoms of NF1. For instance, a
You might consider working with a physical therapist to develop an exercise plan that can help you:
- build strength
- improve mobility
- improve posture
- reduce pain
- increase balance
- perform everyday tasks more comfortably
You can ask your doctor for a referral to a physical therapist who has experience with NF1.
Connecting with other people who have NF1-PN may help you find information, resources, and support for managing your condition. It may also help you feel less alone or isolated.
Consider visiting the Neurofibromatosis Network or another patient advocacy organization to find opportunities to connect with others and to get additional support resources.
You can also look for support groups or social media communities for NF1 online.
Although many people with NF1-PN have helpful tips and resources to share, some may share information or advice that’s not medically accurate or safe to follow. It’s a good idea to check with your doctor to learn whether the advice you receive is accurate and safe.
You might find that symptoms or complications of NF1 or PN affect your ability to complete certain tasks or participate in certain activities at school or work.
You may also need time off from school or work for medical care or to manage symptoms at home.
You might find it helpful to talk with your teachers, school administrators, or employers about your condition and accommodations that may help you manage your health and learning needs.
For example, your school or workplace might be able to adjust your:
- workspace or equipment, so it’s easier or more comfortable to use
- deadlines, so you have more time to complete assignments
- schedule, so you have more flexibility or time off
They may also be able to adjust your assignments or duties to better fit your abilities.
Your school or wider community might also have a disability services office, a vocational rehabilitation program, or other support services to help you find:
- information about your legal rights as a person with disabilities
- tips and resources for managing disabilities at school or work
- new opportunities for education, skill development, or work
If you live in the United States or another country with legal protections for people with disabilities, your school or workplace might have a legal responsibility to provide reasonable accommodations to help you meet your needs.
If you have NF1-PN, the symptoms and complications you experience may change over time.
Learning more about NF1-PN, connecting with a specialist, and getting regular health checkups and recommended health screenings are important for managing your condition.
Let your doctor know if you notice changes in your physical or mental health. They may recommend changes to your treatment or refer you to another specialist.
You might also find it helpful to connect with other people who have NF1-PN.
Your school or workplace may be able to provide accommodations or support resources to help you manage your condition. Members of your healthcare team may also have helpful resources to share.