Compassionate Allowance - Fatal Familial Insomnia

As an exceptionally rare genetic disorder, Fatal Familial Insomnia (FFI) is automatically qualified for Social Security Disability (SSD) benefits. However, you must still submit an application and support your claim with appropriate medical documentation.

There are two disability programs for which you may qualify with FFI:

FFI is also included in the Compassionate Allowances (CAL) program, which has special review and approval procedures in order to get applications for certain conditions through the Social Security Administration’s (SSA) procedural requirements and approved for benefits more quickly.

Medical Evidence and Required Documentation

The SSA must determine certain things in order to approve your application, even under the CAL program. This means you must complete the full application process and submit thorough medical records along with your application.

To support the definitive diagnosis of FFI, your medical records should include evidence from:

  • An Electroencephalography (ECG)
  • An MRI of the brain
  • A Sleep apnea test
  • Genetic evaluation that documents the presence of mutations in the PRNP gene

To substantiate the severity level of your condition, which is required for all disability claims, your medical records must also show that you suffer any or all of the following symptoms:

  • Difficulty sleeping
  • High pulse and high blood pressure
  • Excessive sweating
  • Declining coordination and motor skills

The minimum evidence that your application and medical records must contain in order for you to be approved for disability benefits includes:

  • A thorough clinical history taken by your doctor that includes symptoms you suffer
  • Lab tests, including the PRNP genetic test that documents the presence of mutations

Applying for Benefits

Though it is very uncommon for CAL conditions to be denied benefits, you must still complete the full application and ensure your medical records meet the SSA’s requirements. Collect as many of those records as possible prior to submitting your claim and ensure you turn them in to the SSA at or just after submitting your application for benefits.

Additionally, you should know that there are multiple ways to apply for benefits, including scheduling an appointment with the local SSA office. However, the fastest way to initiate a claim is to fill out your application online via the SSA’s website.

CAL conditions are generally reviewed within just a few short weeks. The more thorough the information is that you provide to the SSA, the faster you will have a decision on your claim.