Is neurofibromatosis 1 curable?

There isn’t a cure for neurofibromatosis, but signs and symptoms can be managed. Generally, the sooner someone is under the care of a doctor trained in treating neurofibromatosis, the better the outcome.

Is Neurofibromatosis type 1 painful?

A genetic disorder such as neurofibromatosis (NF) can cause multiple neurofibromas. Most of these tumors do not hurt or cause problems, but some neurofibromas itch or are painful, and some become tumors. Treatment consists of observation and, if necessary, medications or surgical removal.

What is a plexiform?

(PLEK-sih-form NOOR-oh-fy-BROH-muh) A tumor that forms in the tissue that covers and protects the nerves. Plexiform neurofibromas can occur anywhere in the body outside of the brain and spinal cord. They can occur on the face (including around the eye), neck, arms, legs, back, chest, abdomen, and internal organs.

What does a plexiform neurofibroma look like?

These tumors look like lumps under the skin. The skin over the lump may feel thicker and appear darker than the skin around it. The lump itself may feel like a bundle of thick cords or knots. Plexiform neurofibromas have a type of cell that releases histamine, a chemical in the body that can cause itching.

Is plexiform neurofibroma curable?

How are plexiform neurofibromas treated? Until recently, the only known effective treatment for plexiform neurofibromas has been surgery. Approximately 75% of patients who undergo a complete removal of the tumor without causing significant neurologic impairment or dysfunction are cured.

Is NF1 considered a disability?

Although neurofibromatosis is a serious condition, the Social Security Administration (SSA) does not specifically list the disorder as a disability. But, the symptoms that accompany the condition can be reviewed for benefits.

What does a plexiform feel like?

Plexiform neurofibromas often feel like a bunch of cords or knots beneath the skin and may have a variation in texture or darker pigmentation on top of the skin.

Is NF1 always serious?

The symptoms of neurofibromatosis type 1 (NF1) are often mild and cause no serious health problems. But some people will have severe symptoms. The symptoms of NF1 can affect many different areas of the body, but it’s unlikely someone will develop all of them.