What is it like to live with neurofibromatosis?

If there are no complications, the life expectancy of people with NF is almost normal. With the right education, people with NF can live a normal life. Although mental impairment is generally mild, NF1 is a known cause of attention deficit hyperactivity disorder. Learning disabilities are a common problem.

What is everyday life like for a person with neurofibromatosis?

In addition to the above medical problems, people with NF1 frequently have learning disabilities, attention deficit, or challenges in social situations. Less commonly, individuals with NF1 may develop a cancer, such as a malignant brain tumor, malignant peripheral nerve sheath tumor, pheochromocytoma, or breast cancer.

What is the quality of life for people 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.

Can you live a normal life with neurofibromatosis?

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 affect mental health?

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.

Iris about living with Neurofibromatosis

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).

Can you work with NF1?

Having a diagnosis of Neurofibromatosis does not necessarily mean that you will have problems finding and keeping a job. Many people with NF have successful and fulfilling careers employed in an occupation that they enjoy.

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.

Are neurofibromas 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.

Is NF1 life threatening?

In most cases, symptoms of NF1 are relatively mild, allowing patients to live normal and productive lives. However, the disorder can also be debilitating and, in some cases, life-threatening. NF1 can lead to problems within various systems, organs and functions of the body including: Skin, bone and eye abnormalities.

How is the family of a person with neurofibromatosis affected?

In addition to the stress that a diagnosis of NF brings to families, associated conditions, such as attention deficits, behavioral problems, and difficulties with social interactions, can add more stress and further impact quality of life for the family.

Does NF1 affect the brain?

Symptoms affecting the brain and nervous system are relatively common in NF1. Many people with NF1 get migraines. Some people develop brain tumours, although this is rare.

How long is the average lifespan of a person with neurofibromatosis?

Mean and median ages at death for persons with NF1 were 54.4 and 59 years, respectively, compared with 70.1 and 74 years in the general population.

Does neurofibromatosis affect teeth?

Neurofibromas can cause tooth movement or mobility, eruption dysfunction, inclusion, or infraocclusion of primary or permanent teeth, mandibular canal widening, hypertrophy of underlying bone structures, gingival hyperplasia, or macroglossia with an increase in fungiform papillae.

Can neurofibromatosis cause depression?

Results. Patients with neurofibromatosis reported significantly more symptoms of depression and anxiety, higher levels of perceived stress, and lower levels of self-esteem as compared with general population norms.

How painful is NF1?

Pain in NF1

One of most common challenges for individuals with NF1 is living with chronic pain. By definition, chronic pain is persistent pain that continues for weeks, months, or even years. This occurs when the pain signals within a person's nerves continue to fire, and the severity can vary by individual.

How do you get rid of NF1 bumps?

There is no known treatment or cure for neurofibromatosis or schwannomatosis. Medication can be prescribed to help with pain. In some cases, growths may be removed surgically or reduced with radiation therapy.

Does neurofibromatosis cause back pain?

The effects of neurofibromatosis on bone and spine

This condition may result in pain in the back and limbs, bladder control problems, and numbness in severe cases. Neurofibromatosis may cause tumors on an around the spinal cord. Even benign tumors in this area can cause pain and weakness in the most severe cases.

Does neurofibromatosis cause behavior problems?

The most common complications of NF1 are cognitive and behavioral deficits. Up to 80% of children with NF1 experience cognitive and behavioral difficulties involving different domains.

Does neurofibromatosis affect learning?

As many as 80% of all children with neurofibromatosis will have associated difficulties that affect learning, including attention problems, memory problems, spatial perception difficulties, and selective problems in reading or mathematics.

Does NF1 weaken immune system?

Although it has not been thoroughly studied in NF1, the high concentrations of cytokines found in the serum of NF1 patients may alter immune function in favor of immune suppression and tumorigenesis.

Does NF have a disability?

Fifty to sixty percent of children with NF1 will have some form of learning disability. NF1 patients typically have normal intelligence, but experience specific problems with reading, writing and the use of numbers.

Does NF1 affect puberty?

Delayed or Early Puberty: Most people with NF1 will start puberty at the expected age range, but some may have precocious (early) or delayed puberty. Small Stature: Affects about 30% of people with NF1 and may be treated with growth hormone.

Can you have café-au-lait spots and not have NF1?

Can you have café-au-lait spots without having neurofibromatosis? Yes. It is very common for people to have a few café-au-lait spots on their bodies without having an underlying condition like neurofibromatosis type 1 (NF1).

Can I donate blood if I have neurofibromatosis?

Must not donate if:

Neurofibromatosis is an inherited condition that causes tumours (swellings) on nerve tissue. These tumours are usually not cancerous but occasionally may become malignant. If they are in the brain they may cause epilepsy.