Plexiform Neurofibromas: Resources & Support

Medically Reviewed by Brunilda Nazario, MD on January 26, 2022
Written by Rachel Reiff Ellis
4 min read

If you or your child is living with plexiform neurofibroma, you may need a variety of resources to help navigate this condition and all that comes with it. You probably have a lot of questions and feel many different emotions.

Numerous resources are available to offer support, community, and counseling. Tap into these tools:

Outside of your primary medical team, who diagnose and treat the condition, many other therapists and experts can support the physical and emotional needs that can come along with plexiform neurofibromas.

You might use a:

Counselor. For many people, living with this condition can lead to mental health issues, such as depression or anxiety. A psychologist, psychiatrist, or therapist can help you or your child deal with the stress about the diagnosis and treatment of plexiform neurofibromas or other related issues through one-on-one sessions or family sessions. It may be helpful to look for a professional who works with people who have plexiform neurofibromas or conditions like it.

Social worker. Often, social workers can help people figure out financial, social, or logistical issues that may come up as you get treatment for a condition.

Speech therapist. If a tumor affects the nerves that control speech or swallowing, a speech therapist can help diagnose the problem and help children or adults with exercises and rehab.

Physical therapist. Often, tumors that affect the spine or other bones can make it harder to walk, balance, or stay coordinated. A physical therapist can come up with exercises to help strengthen any weak areas.

Occupational therapist. To better deal with daily tasks like getting dressed, eating, or going to the bathroom, an occupational therapist can come into your home and help you or your child learn new strategies for tackling these tasks. These therapists can also make recommendations to modify your house to help support the care you need.

Learning specialist. Sometimes children with plexiform neurofibromas can have learning difficulties because of attention problems or brain dysfunction. A learning specialist can work with your child’s school to help develop an individualized education program (IEP), which is a learning plan created just for your child.

Audiologist. This professional can recommend surgery or devices to correct hearing loss that happens because of nerve damage.

Nutritionist. Treatments for plexiform neurofibroma can sometimes make you lose your appetite or feel nauseous. A nutritionist can monitor your diet to be sure you’re getting the nutrients you need. For children with the condition, a nutritionist can make sure they’re getting the right kinds of foods for healthy growth.

Play therapist. A play therapist uses everyday activities and play to work on skills often delayed in children with plexiform neurofibromas.

Plugging into a network of people dedicated to neurofibromatosis research and community can open many doors for people and families living with the condition. You can meet others who understand what it’s like to live with -- or love someone with -- plexiform neurofibroma. You can also learn more about the condition and find out about clinical trials you or your child may be able to join.

Ask your doctor or social worker to recommend some support groups for people living with the condition. Even if there are no groups where you live, you can connect online with organizations that focus on the condition and offer resources and support to those living with it. Groups like the Neurofibromatosis Network or RareConnect may be good places to start.

It can be especially challenging to help a child learn about and live with the condition. You can help foster a healthy awareness and acceptance of it by being open with other family members, friends, and with your child. Use these strategies:

  • Let your child and other family members know they can ask questions and express their feelings about the condition.
  • Explain any treatments your child will need in a way they -- or their siblings -- can understand.
  • Talk about the differences your child may see between their own appearance or abilities and those of other children. Help them see ways in which they are the same as other children, too.
  • Know the signs and symptoms of ADHD (common in kids who have NF1), so you can identify them in your child and get them the support they need.

As you support your child, you’ll also need support. You can:

  • Create daily routines. This helps both you and your child know what to expect and feel a sense of control.
  • Help your child become an active participant in their care. As they become older, they’ll become the decision-maker when it comes to treatment. Teach them responsibility along the way, so they learn how to advocate and care for themselves.
  • Lean on others for help. Create a network of friends and family who can step in when you need a break. Having your own counselor is a good idea, too.

Using electronic devices can help your child develop stronger fine motor skills while also strengthening certain life skills. The following apps focus on specific areas that may be weaknesses for your child: