After experiencing symptoms such as unrelenting insomnia, and accelerated breathing and heart rate, the doctor came back with a shocking diagnosis with disturbing implications – for you, as well as for other members of your family. The disease is Fatal Familial Insomnia, a genetic disorder so rare A Man Laying in Bed Having a Hard Time Sleepingand serious that the Social Security Administration (SSA) has included it among the conditions eligible for expedited processing for Social Security disability benefits under its Compassionate Allowances Program, which was first launched in 2008. The SSA realizes that patients diagnosed with Fatal Familial Insomnia are fighting a fatal clock and don't have the months to years that it usually takes to process a Social Security disability application. Thanks to the condition's inclusion in the Compassionate Allowances Program, patients can have their application processed in a matter of weeks—not months or years—provided that they complete the application correctly and submit all of the necessary medical documentation to prove the seriousness of their diagnosis.

What Is Fatal Familial Insomnia?

Fatal Familial Insomnia is an extremely rare genetic sleep disorder that was first documented in an Italian man in 1765. Caused by prion mutation of the PRNP gene, the disorder affects the part of the brain responsible for sensory perception and regulation of motor function resulting in severe degeneration.

Patients diagnosed with Fatal Familial Insomnia experience a range of debilitating and dangerous symptoms, including:

  • Unrelenting insomnia (with or without a diurnal dream state)

  • Profuse sweating

  • Chronic fever

  • Delirium

  • Accelerated breathing

  • Accelerated heart rate

  • Hallucinations

  • Secondary infections

  • Coma

As the disease progresses, it becomes deadlier, as it leads to abnormal functioning of the autonomic nervous system, known as dysautonomia, followed by deterioration of the motor and cognitive systems, coma and, eventually, death.

Exceptionally rare, the genetic mutation that causes Fatal Familial Insomnia has only been documented in 40 families around the world. A progressive sleep disorder, the symptoms of Fatal Familial Insomnia usually develops in adulthood. Unfortunately, there are no effective treatments or cures for Fatal Familial Insomnia, as all treatments currently in use are merely symptomatic and palliative. The speed of the disorder's progression can vary by patient, but most Fatal Familial Insomnia patients die within 6 to 36 months after diagnosis.

Applying for Social Security Disability Benefits for Fatal Familial Insomnia

The Social Security Administration knows that Fatal Familial Insomnia patients don't have the time or energy to deal with bureaucratic red tape, so it makes the Social Security disability benefits application as simple and straightforward as possible for patients with potentially fatal illnesses. To apply for SSDI or SSI benefits for Fatal Familial Insomnia, patients must fully complete the agency's application and submit the following medical documentation:

  • Electroencephalography

  • MRI of the brain

  • Results of sleep apnea testing

  • Test results showing evidence of mutations in the PRNP gene

  • History of difficulty sleeping

  • High pulse and blood pressure

  • Excessive sweating

  • Decline in coordination and motor control

Additionally, Fatal Familial Insomnia meets the SSA's listing for 11.17 A or B.

Do You Need Help Applying for Social Security Disability Benefits?

If you've been diagnosed with Fatal Familial Insomnia, you need to spend your limited time and energy focusing on your health and spending time with your family—not wrangling with the SSA to get the Social Security disability benefits you need and deserve. Even though the SSA offers expedited application processing for patients with serious disorders, delays in the process can occur if the application is completed incorrectly or if the proper medical documentation isn't included. In rare cases, a person with a condition included in the Compassionate Allowances Program may have their application denied. Don't let this happen to you. Work with a knowledgeable, experienced disability attorney that knows the ins and outs of the SSA's complicated bureaucratic process. Contact Keefe Disability Law today to schedule your free initial consultation or to request a free copy of our eBook, 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