If you or your child have been diagnosed with Neurofibromatosis you may be considering filing a claim for SSDI (Social Security Disability Insurance) or SSI (Supplemental Security Income). This post addresses how Neurofibromatosis will be evaluated by the Social Security Administration.

According to the Mayo Clinic: “Neurofibromatosis is a genetic disorder that disturbs cell growth in your nervous system, causing tumors to form on nerve tissue. These tumors may develop anywhere in your nervous system, including in your brain, spinal cord and nerves. Neurofibromatosis is usually diagnosed in childhood or early adulthood.”

There are two types of Neurofibromatosis. This post discusses Type I. A discussion of both types can be found here.

Genetic testing is done to determine if you have Neurofibromatosis but there are physical signs that can signal the need for testing. Your child may have cafe au lait spots, freckling, bumps under the skin or on eyes, bone deformities, learning difficulties, larger than average head size and short stature. Neurofibromatosis symptoms can range from severely disabling to barely noticeable.

In my clients with Neurofibromatosis Type I , the cafe au lait spots seem to be the most noticeable physical feature. In addition, learning difficulties can mean slowed development in childhood or the development of ADHD. ADHD and scoliosis occur frequently in people with Neurofibromatosis. Found here

The Social Security Administration does not have a specific listing for Neurofibromatosis, but your symptoms may meet another listing. For example, if you suffer from severe scoliosis from your Neurofibromatosis you could be evaluated under 1.00 Musculoskeletal System (for adults) or 101.00 Musculoskeletal – Childhood.

A diagnosis of Neurofibromatosis alone is not enough to qualify you for SSDI or SSI, you must have symptoms from your Neurofibromatosis that negatively impact your ability to work. Usually it is the combination of your symptoms that prevent you from working.

If your Neurofibromatosis’ symptoms are preventing you from working, you should file a claim for SSDI or SSI as soon as possible. Delay may cause you to lose benefits. After you apply for benefits, your case will go through the Disability Process.