NF1 is a lifelong condition, and understanding the basics helps parents feel more prepared. In addition to spots on the skin, learning or attention challenges and benign tumors, called neurofibromas, are common. A subset of these, plexiform neurofibromas, can be larger or more complex, and often come with treatment decisions.
“If possible, seek out a neurofibromatosis clinic — even a one-time consultation can help you learn more about what your child’s NF1 is like,” says Roy Strowd, MD, professor of neurology at Wake Forest University School of Medicine and co-director of the neurofibromatosis clinic at Atrium Health Wake Forest Baptist in Winston-Salem, North Carolina.
These consultations can also be a source for overall strategies to improve health, prevent complications, and be plugged into a specialized team if complications do develop, says Dr. Strowd.
“This [learning more about NF1] can be incredibly empowering for patients and is tremendously rewarding as a physician,” he says.
The Children’s Tumor Foundation is a great resource for patients, says Miller. The website includes an overview of the condition, an FAQ page, and a photo gallery of people with neurofibromatosis.
Understand That NF1 Affects Each Child Differently
About half of all the cases of NF1 are in a family (inherited from a parent), and half of the cases are new cases — the result of a spontaneous or new change in the NF gene before they were born.
“But even within the same family, where they all have the same genetic variant causing NF, the symptoms can be quite different in the sense of which of the complications develop,” says Miller.
Although it’s normal to want to know how a condition will affect your child in the future, the unpredictability of NF1 makes that very challenging, says Nicole Ullrich, MD, PhD, co-director of the neurofibromatosis program at Boston Children’s Hospital and professor of neurology at Harvard Medical School in Boston.
“That’s because we can’t predict what physical symptoms are going to appear based on their genetic abnormality,” she says.
Understanding that NF1 looks different in every child is important. While some kids may only need routine monitoring, others require treatment for vision changes, bone growth issues, or tumor complications.
