Neurofibromatosis and SSDI/SSI

Neurofibromatosis and SSDI/SSI
By Kimberly BishopOctober 10, 2013

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 ). Is Neurofibromatosis a disability to SSA? 

This article is not offered as medical advice. If you or your child are having symptoms of a neurological disorder, please seek medical attention.

There are three types of Neurofibromatosis. This post discusses Type I (von Recklinghaus disease or nf1 gene). Neurofibromatosis Type II and Schwannomatosis are the other types. 

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. Benign tumors (neurofibroma) may develop anywhere in your nervous system, including in your brain, spinal cord and nerves.

Unfortunately, the location of the tumor may cause you to have symptoms (brain tumor, optic nerve or auditory nerve tumor, etc.). In addition, a plexiform neurofibroma can affect many nerves at once.

Cancerous tumors can also form called malignant peripheral nerve sheath tumors. SSA has a compassionate allowance specifically for malignant peripheral nerve sheath tumors (Peripheral Nerve Cancer).

Neurofibromatosis is usually diagnosed in childhood or early adulthood but is a progressive disease. A patient with Neurofibromatosis Type I can exhibit physical signs that can signal the need for genetic testing.

Diagnostic criteria includes cafe au lait spots, freckling, bumps under the skin or on eyes (even in the iris of the eye - lisch nodules), bone deformity, learning difficulties, larger than average head size and short stature (bone abnormalities). Neurofibromatosis symptoms can range from severely disabling to barely noticeable.

There is no standard treatment for Neurofibromatosis. Surgery to remove symptom-causing tumors, chemotherapy or radiation, orthopedic surgery for bone issues, eye surgery to improve vision and pain management are all possibilities (Via WebMD). 

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

Is Neurofibromatosis a disability according to SSA?

Almost any impairment, if severe enough, can qualify you for disability benefits (there are exceptions for drug and alcohol related disorders). Severity is determined by looking at your symptoms, treatments you have tried, complications from your disorder and how all these affect your ability to function on a daily basis.

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 or function in childhood. Usually it is the combination of a nf1 patients symptoms that prevent functioning and working.

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

The SSA can also find a claimant disabled based on the combination of their impairments or on "The Grids" if they are 50 years old and over. If your Neurofibromatosis type 1 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.

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