Compassionate Allowance - Fatal Familial Insomnia

It can take the average disability applicant more than two years before Social Security Disability benefits are approved and begin to pay out. Unfortunately some disability applicants have a hard time waiting just a few months for benefits to arrive, let alone years. That is why the SSA rolled out their Compassionate Allowances program in 2008. Understanding that some conditions are more severe than others, some applicants can now be approved for benefits in a matter of days rather than waiting months or years. There are now 200 conditions that qualify for fast-track processing under the Compassionate Allowances guidelines. Fatal Familial Insomnia is one of the conditions that is now included in the Compassionate Allowances list of disabling conditions, allowing these applicants to receive benefits more quickly and in a timely manner.

Back to top

Fatal Familial Insomnia - Condition and Symptoms

Fatal familial insomnia is a very rare genetic condition. In fact, only about 40 families in the world are known to even carry the genetic mutation that is linked to the disorder. Unfortunately, there is no cure or treatment for this disorder and research is very limited due to the rare nature of the disease. Those who suffer from the condition can go months without sleep and suffer severe effects because of it. The disease causes abnormal proteins to build up in the brain. These proteins destroy nerve cells and leave sponge-like holes in the brain. Doctor intervention doesn't seem to alleviate the condition or its symptoms. Some of the symptoms associated with Fatal Familial Insomnia include:

  • Insomnia-like symptoms
  • Profuse sweating
  • Accelerated breathing
  • Accelerated heart rate
  • Chronic fever
  • Secondary infections
  • Hallucinations
  • Delirium
  • Coma

When an individual is suffering from Fatal Familial Insomnia, the sleep cycle of the afflicted individual begins to break down. The boundaries between wakefulness, REM sleep and short-wave sleep become blurred. Death usually occurs between 8 to 72 months after onset of the symptoms. This is usually due to secondary infection or coma associated with the condition.

Back to top

Applying for Disability with Fatal Familial Insomnia

In order to qualify for Social Security Disability benefits due to Fatal Familial Insomnia, you will need to provide the SSA with medical evidence that supports your claim. In order to approve such a claim under the SSA’s Compassionate Allowances program, the SSA looks for specific medical documentation. In order to avoid delays with the approval of your claim, you will want to make sure that you include the following medical documentation with your claim for benefits:

  • A clinical history with examination notes that describe the diagnostic features of the condition
  • Genetic testing showing mutations in the PRNP gene
  • Electroencephalography results
  • Imaging results of an MRI of the brain
  • Results of sleep apnea testing

The above-mentioned supporting medical evidence will be necessary in order to support your claim for disability benefits and to help the SSA understand how your claim for benefits qualifies for processing under the Compassionate Allowances guidelines.

Back to top

Fatal Familial Insomnia and Your Social Security Disability Case

If you are suffering from Fatal Familial Insomnia and wish to obtain Social Security Disability benefits, you should consider retaining the services of a disability attorney prior to filing your claim with the SSA. While it is rare for the SSA to deny such a claim, it has been known to happen – usually due to a lack of proper medical documentation. By working with a disability lawyer, you can ensure that you submit sufficient medical evidence to the SSA, thereby avoiding the need for a disability appeal.

Back to top
Find Out If I Qualify for Benefits!