What is the life expectancy of a person with neurofibromatosis?

The mean age at death in this study was 43 years (Imaizumi 1995). However, the authors did not distinguish between persons with NF1 and neurofibromatosis 2 (NF2), and no data were available on causes of death other than neurofibromatosis.

Is neurofibromatosis classed as 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.

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).

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.

Can people with NF1 live a normal life?

Most people with NF1 have no or few medical problems and live normal lives, with no need for treatment. However, because every person with NF1 is at risk of complications from this disorder, it is important that they are regularly reviewed by a doctor who is familiar with the condition.

Can NF1 cause death?

NF1 can also result in serious complications which affect diverse body systems and which are responsible for the deaths related to NF1; these include disfigurement, evolving scoliosis, cognitive or neurological impairment, vasculopathy, and malignancy, in particular, malignant tumors of peripheral and central nerve …

Can you donate blood if you have NF1?

People with NF1 can donate their blood and organs to other people who are in need of blood or organ transplants. The person who receives their blood and/or organs will not develop NF1 as a result of the donation.

How serious is NF1?

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.

Is NF1 life threatening?

NF1 is often not life-threatening. But other problems may occur over time. These may include seizures, developmental delay, and increased risk for noncancer tumors. Your child’s healthcare provider will tell you more about your child’s condition and treatment choices.

Is NF1 serious?

Can a neurofibroma burst?

As neurofibroma is highly vascular, vessel rupture can occur spontaneously or with trivial trauma.

Is NF1 painful?

Sporadic neurofibromas typically grow on the skin. People with NF1 are predisposed to developing multiple neurofibromas. Most of these tumors do not hurt or cause problems, but some may itch or be painful.

What is neurofibromatosis type 1 (NF1)?

Summary Summary. Neurofibromatosis type 1 (NF1) is a genetic condition characterized primarily by changes in skin color and the growth of benign (non-cancerous) tumors along the nerves of the skin, brain, and other parts of the body.

Is neurofibromatosis dominant?

Neurofibromatosis is inherited as an autosomal (non-sex-linked) dominant disorder. This means that each child born to a parent with neurofibromatosis has a 50 percent chance of inheriting the defective gene and developing the disease.

What is neurofibromatosis syndrome?

Neurofibromatosis syndrome: Neurofibromatosis syndrome: Introduction. Neurofibromatosis syndrome: A rare genetic disorder characterized by areas of increased and decreased skin pigmentation and the development of many non-cancerous nerve and skin tumors some of which may eventually become malignant.