A tuberous sclerosis diagnosis can mean different things for different people. For some, the symptoms of the disorder are so mild, they're hardly noticeable. For others, the diagnosis explains years of mysterious and debilitating problems, as well as a number of serious and related disabilities. Tuberous sclerosis is a relatively rare condition and doesn't have a dedicated listing in the Social Security Administration's (SSA) “Blue Book” Listing of Impairments. Additionally, applications for Social Security (SS) Disability benefits for the disorder don't qualify for expedited processing under the agency's Compassionate Allowances (CAL) program. However, patients who are totally disabled by the symptoms of their tuberous sclerosis may still qualify for SS benefits.

What Is Tuberous Sclerosis?

Tuberous sclerosis, also known as tuberous sclerosis complex, is a rare, multi-system genetic disease that causes benign tumors to grow in various parts of the body, including the brain, skin, lungs, heart, kidneys, and eyes. The condition can be diagnosed during skin or eye exams, as well as through medical imaging tests such as heart echocardiograms or electrocardiograms, renal ultrasounds, brain MRIs, and CT scans. In most cases, tuberous sclerosis is diagnosed during infancy, when heart tumors known as rhabdomyomas are detected during ultrasounds, or during childhood. Other times, the symptoms are so mild during infancy and childhood that the condition remains undiagnosed or isn't diagnosed until late adolescence or adulthood, when the symptoms have progressed significantly.

Tuberous sclerosis can cause a wide range of symptoms, including:

  • Seizures (caused by lesions forming in the brain)—often the first symptom that leads to diagnosis in early life
  • Developmental delays, including intellectual or learning disabilities
  • Skin conditions, including facial lesions, areas of thickened skin, or lesions under or around the nails
  • White patches on the retina that may or may not interfere with vision
  • Damaged kidney function due to the growth of lesions
  • Lung growths that cause coughing or shortness of breath
  • Heart lesions that may or may not shrink over time
  • Behavior issues such as aggression or angry outbursts, social withdrawal, hyperactivity, or repetitive behaviors
  • Difficulty communicating, trouble navigating social situations, or dealing with autism spectrum disorders


While there is no cure for tuberous sclerosis, many patients lead full, productive lives with seizure control drugs and surgeries to remove tumors. However, for patients who don't respond well to the available treatments, attempting regular activities and holding a job can be a daily struggle. For these individuals, applying for SS benefits may be a good option.

Applying for SS Benefits for Tuberous Sclerosis

When applying for SS benefits for tuberous sclerosis, keeping thorough medical records is absolutely essential. Medical documentation submitted with your SS application should include copies of lab work, medical imaging, and other diagnostic procedures, as well as written statements from any and all doctors treating your condition. Statements from treating medical professionals are particularly important for patients whose tuberous sclerosis has worsened over time. These statements can be used to demonstrate that the symptoms of the condition prevent you from holding a job and engaging in substantial gainful employment. Your doctors can complete a Residual Functional Capacity (RFC) form on your behalf, discussing how your disorder and its symptoms affect your ability to perform standard work-related activities.

Do You Need Help Applying for SS Benefits?

Applying for SS benefits for a rare condition can be difficult, and the process can be long and involved.  Working with knowledgeable and experienced disability attorneys when preparing your application may help expedite that process. Seasoned attorneys know just what the SSA looks for when evaluating an application and can help ensure your application is complete before you submit it.

For more information on applying for disability benefits for tuberous sclerosis, reach out to the skilled attorneys with Keefe Disability Law for a free and confidential evaluation of your case, or request a free copy of the book, The Five Most Frequently Asked Questions About Social Security Disability.

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