Being told you have neurofibromatosis (NF) can be shocking and overwhelming. Although people can be diagnosed with this condition during adolescence or in their early 20s, NF is usually diagnosed in childhood. If you’re the parent of a young child with this condition, you may worry that your child will have trouble achieving full independence or holding a job. If you’ve been diagnosed with NF when you’re older, not only will you deal with the often painful and concerning symptoms and complications of the disorder, you may worry how you’ll provide for your family.

Patients whose NF is so severe that it prevents them from working may be eligible for Social Security (SS) Disability benefits through one of the Social Security Administration's (SSA) programs such as Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI). However, because NF isn't included in the SSA's “Blue Book” Listing of Impairments, patients have to carefully document their condition and its effects to prove their eligibility and may benefit from the assistance of an experienced disability attorney. 

What Is Neurofibromatosis?

NF is a rare genetic disorder that causes tumors to form on nerve tissue throughout a patient's nervous system. Often found on the spinal cord, brain, or the nerves themselves, these tumors are usually benign; however, over time, they may become malignant. Considered a rare condition, there are fewer than 200,000 new cases of NF diagnosed each year in the United States.

There are three types of NF, and each is characterized by its own set of symptoms and complications. Here is a brief look at each type:


NF1 is usually diagnosed at birth or shortly after and can cause the following symptoms:

  • Brown spots on the skin, also known as cafe au lait spots
  • Soft, benign tumors—known as neurofibromas—on or under the skin
  • Tumors—known as optic glioma—on the optic nerve
  • Freckles in the groin area or under the armpits
  • Bone deformities
  • Larger than normal head size
  • Below average height
  • Learning disabilities


Complications of NF1 can include neurological, skeletal, vision, cardiovascular, breathing, and hormonal problems; benign adrenal gland tumors; and cancer.


Less common than NF1, NF2 can cause slow-growing tumors (vestibular schwannomas) to form in both ears, resulting in headaches, problems with balance, gradual hearing loss, and ringing in the ears.

These tumors can also form on the peripheral, spinal, optic, and cranial nerves. When that occurs, patients may experience:

  • Chronic pain
  • Numbness or weakness in the extremities
  • Vision problems


Complications of NF2 can include brain or spinal tumors that require frequent surgeries; partial or total hearing loss; and facial nerve damage.


Schwannomatosis, the third type of NF, can cause tumors to form on the spinal, cranial, and peripheral nerves, causing muscle loss and numbness or weakness. Debilitating chronic pain is the most common complication associated with schwannomatosis.

Applying for SS Benefits for NF

Although the symptoms and complications of NF can be debilitating, those applying for SS disability benefits must prove that the condition negatively affects their ability to work and engage in substantial gainful employment (SGA). If NF has prevented you from holding a job for 12 months or longer, or, in the case of children, it is likely to affect their employment prospects in the future, you may be eligible for SS benefits. Ask the doctor who treats your NF to complete a Residual Functional Capacity (RFC) form, explaining your diagnosis and detailing how the disorder affects your ability to perform day-to-day tasks, specifically those related to work.

Do You Need Help Applying for SS?

If you are struggling to cope with an NF diagnosis, SS benefits may provide the financial help you need. Contact the dedicated attorneys with Keefe Disability Law today for a no-cost evaluation of your disability case or to request a free copy of our book, The Five Most Frequently Asked Questions About Social Security Disability. Our skilled attorneys are happy to answer your questions and help guide you through the SS application process.

Are You Looking for a Social Security Disability Attorney in Boston, MA?

If you are looking to apply for social security disability, you need to speak with an experienced social security disability lawyer as soon as possible. Please contact us online or call our Natick Office directly at 508.283.5500 to schedule your free consultation.


John L. Keefe
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Founding Attorney, Massachusetts Social Security Disability Lawyer