Understanding Neurofibromatosis Type 1 (NF1) Plexiform Neurofibromas (PN)

What is NF1?

NF1 is a rare, progressive condition caused by a mutation or flaw in a particular gene. NF1 is usually diagnosed in early childhood. It appears in an estimated 1 out of every 3000 infants.

What are plexiform neurofibromas (PN), or plexiform tumors?

30% to 50%

of children with NF1 may develop benign (noncancerous) tumors called plexiform neurofibromas or plexiform tumors, which grow along nerves.

30% to 50%of children with NF1 may develop benign (noncancerous) tumors called plexiform neurofibromas or plexiform tumors, which grow along nerves.

Where do NF1 plexiform neurofibromas occur?

These tumors can grow on any nerve in the body and can be large or small in size.

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TREATMENT FOR NF1 PLEXIFORM NEUROFIBROMAS (PN)

Doctors

Which doctors and healthcare specialists treat pediatric NF1 plexiform neurofibromas (PN)?

NF1 plexiform neurofibromas are usually treated by a team of healthcare specialists, including neuro-oncologists, oncologists, neurologists, geneticists, surgeons, and others who specialize in treating symptoms related to this disease.

The location of your child’s plexiform neurofibromas will help determine which doctors are best to see for treatment.

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Why can’t some NF1 plexiform neurofibromas (PN) be completely removed by surgery?

Surgery for NF1 plexiform neurofibromas may not be recommended by your child’s healthcare provider. One reason is plexiform neurofibromas may be closely intertwined with critical nerves and located near major organs. Also, PN may not be completely removed by surgery.

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Are there any other ways to treat NF1 plexiform neurofibromas (PN)?

Your child’s doctor may prescribe therapies or medicines to help relieve symptoms of NF1 plexiform neurofibromas (PN).

Previously, there have been no FDA-approved medications proven to reduce the size of NF1 plexiform neurofibromas (PN).

Surgery has been a standard treatment for NF1 plexiform neurofibromas (PN).

Koselugo is the first FDA-approved treatment proven to shrink PN tumors.

HELPING YOUR CHILD WITH NF1 PLEXIFORM NEUROFIBROMAS (PN) REQUIRES A FAMILY COMMITMENT

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Plexiform neurofibromas (PN) can cause a lot of uncertainty. Creating daily routines for children can help them feel secure and give them a positive sense of control.

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Building a supportive home environment in which all family members are treated equally with respect and acceptance can benefit not only the child with NF1 plexiform neurofibromas, but also siblings, who may feel they’re getting less attention.

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Making the transition from childhood to teenage years can be especially difficult when living with NF1 PN. Helping your child gradually take more control of their health care, medications, and treatment decisions can encourage responsibility and help them feel empowered.

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Important Safety Inforamtion