Is there a support group for neurofibromatosis?

Neurofibromatosis Family Association (NFFA) NFFA is a parent volunteer group that exists to support families and individuals at CHOP who are affected by neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2) or schwannomatosis.

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 is the quality of life for someone with neurofibromatosis?

Individuals with NF1 and NF2 have low quality of life, and this correlates with pain, anxiety, and depression, which are prevalent in NF1 and NF2. Perceived physical appearance predicts quality of life in NF1.

How do you stop neurofibromas from growing?

There is no medication that can prevent neurofibromas from growing. And, there is nothing you can do that would make more neurofibromas develop. Neurofibromas often appear or grow in size during times of hormone changes such as puberty (which you can’t avoid) and pregnancy.

Is cafe au lait spots normal?

Yes. Café-au-lait (CAL) spots are most often present on a newborn’s skin but it is common for CAL spots to develop on a person’s skin later in life. It is normal for a person to have a few CAL spots but more than six spots may be a sign of an underlying condition.

Is there a cure coming soon for neurofibromatosis?

Neurofibromatosis can be treated and managed, but there is no cure. MSK recently launched a neurofibromatosis center to improve the treatment of this disease. Neurofibromatosis is a genetic disorder that often leads to tumors throughout the nervous system, including the brain, spinal cord, and nerves.

Can people with neurofibromatosis live normal lives?

Children and adults with NF1 can have a variety of symptoms and medical problems which can change across a lifespan. Most people with NF1 have a normal life expectancy. Because many of the other clinical features of NF1 develop as an individual gets older, getting the correct diagnosis may take several years.

Does neurofibromatosis worsen with age?

Neurofibromas may increase in number with age. Bone deformities. Abnormal bone development and a deficiency in bone mineral density can cause bone deformities such as a curved spine (scoliosis) or a bowed lower leg. Tumor on the optic nerve (optic glioma).

Is Neurofibromatosis a mental illness?

Neurofibromatosis type 1 (NF1) is often associated with psychiatric disorders, which are more frequent in NF1 than in general population (33% of patients). Dysthymia is the most frequent diagnosis (21% of patients). There is also a high prevalence of depressive mood (7%), anxiety (1-6%), and personality (3%) disorders.

When should I worry about café-au-lait spots?

Visit your healthcare provider if you notice your child’s café-au-lait (CAL) spots appear swollen, bumpy or lumpy to the touch or if they increase in size or number. It’s common to have a few CAL spots, but more than six spots can be a sign of an underlying condition.