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Rare conditions of Compassionate Allowance: Dravet syndrome

If you're a regular visitor to our blog, then you may have come across our series of posts on the rare conditions listed as Compassionate Allowances. We have been highlighting a number of conditions in an effort to not only inform the public about these debilitating conditions but to also educate patients about their eligibility for disability benefits.

In today's post, we'd like to add to our series by taking a look at Dravet syndrome. Like many of the other conditions we have already talked about, Dravet syndrome is incredibly rare, occurring in roughly 1 in 20 to 1 in 40,000 people, claims the Epilepsy Foundation. Though considered a genetic disorder, Dravet syndrome isn't always inherited. Instead, it may develop because of a gene mutation.

Symptoms indicating that an individual has Dravet syndrome typically start in the first year and last throughout an individual's life. According to the Dravet Syndrome Foundation, "[i]nitial seizures are most often prolonged events." But as the child ages, "other seizure types begin to emerge." Seizure episodes can strike without warning in some cases, creating a life-long need for constant attention from a caretaker.

Most patients with Dravet syndrome experience developmental delays as well as: movement and balance issues, difficulties sleeping, delayed speech and language development, sensory integration disorders, chronic infections, and growth and nutrition issues just to name a few. In most cases, Dravet syndrome "severely impede[s] the quality of life of the patient."

Dravet syndrome and disability benefits

Because of the severity of Dravet syndrome, a child may be eligible for Supplemental Security Income (SSI). Since the condition is listed as a Compassionate Allowance, an application listing Dravet syndrome may be fast tracked toward approval for benefits. Because Dravet syndrome can be draining financially, many who are approved for SSI benefits are grateful to have their medical costs partially paid for.

Sources: The Dravet Syndrome Foundation, "What is Dravet Syndrome?" Accessed Jan. 7, 2016

The Epilepsy Foundation, "Dravet Syndrome," Accessed Jan. 7, 2016

The Social Security Administration, "DI 23022.943 Dravet Syndrome," Accessed Jan. 7, 2016

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