What is epilepsy?
Epilepsy is a chronic seizure disorder. Seizures are disruption of the electrical communication in the brain. Provoked seizures result from damage or inflammation caused by another condition such as stroke, infection, or electrolyte disturbance. Unprovoked seizures do not have a known cause.1
There are many different types of seizures. Focal (partial) seizures, which begins in one brain hemisphere, can be simple or complex depending on whether or not the patient loses consciousness during the seizure. Generalized seizures, which begin in both hemispheres of the brain, can be classified as absence, tonic, atonic, clonic, myoclonic, or tonic-clonic. The types of seizures depends on what kind of symptoms occur during the seizure.
Epilepsy syndromes are diagnoses which describe the combination of specific type of seizures, symptoms, and/or underlying genetic cause. Different types of seizure disorders respond to various seizure medications.
Examples of some seizure disorders treated by specialty medication dispensed by Accredo are below:
Dravet Syndrome (DS) is a severe form of epilepsy which appears in the first year of life in infants. More than 80% of patients with DS have a mutation in the SCN1A gene, a gene for the sodium ion channel. The sodium ion channel is important in the conduction electrical signals of any tissue including the brain. Seizures are often triggered by high body temperature, ataxia, sleep disturbances and other health problems.
Infantile spasms (also known as West syndrome) usually occur between 3 and 10 months of age. The spasms may look like a violent jackknife movement or just a mild twitch. Drug treatment is necessary to control the seizures, and hopefully to stop them altogether. Even with medication, developments of another epileptic syndrome or intellectual disability are possible.
Lennox Gastaut Syndrome (LGS) is a difficult to treat form of epilepsy that usually presents in infancy or early childhood. Children with LGS may experience different types of seizures (atonic, tonic and atypical absence seizures), cognitive disabilities and delays in development. LGS is resistant to many ant-seizure medications but research is still continuing to identify new therapies.
Tuberous Sclerosis Complex is a rare genetic disease which leads to the growth of non-malignant tumors, called hamartomas, on various organs of the body. Mutations in the TSC1 or TSC2 genes have been known to lead to Tuberous Sclerosis, these mutations can happens for unknown reasons or be inherited as autosomal dominant trait. Most cases are from new gene mutations in individuals with no family history of the disease.
How common is epilepsy?
There are 150,000 people who are diagnosed with epilepsy every year. In the United States, 3.4 million people have epilepsy: 3 million adults and 470,000 children. At least 1 million people have uncontrolled Epilepsy.2
Dravet Syndrome only accounts for 0.17% of all epilepsies. Dravet Syndrome is a rare disease that only affects 0.0064% of individuals in the United Stated, but approximately 80-90% of those individuals have a SCN1A mutation.3
Infantile spasms is estimated to occur in 3 per 10,000 live births in the United States and accounts for 30% of all infant epilepsy cases. It is slightly more common in males, with 60% of the cases. It affects approximately 2,500 children in the United States every year.4
Lennox Gastaut Syndrome is believed to account for 1-4% of all childhood epilepsy, usually affecting children between 2- 7 years of age. It is slightly more common in males and estimated to occur in 2 per 100,000 children every year.5
Tuberous Sclerosis Complex affects between 40,000-80,000 Amercians. It is diagnosed in approximately 1 in 6,0000 newborns in the United States. All races, ethnic groups and genders are equally affected.6
Questions regarding your epilepsy therapy?
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- 1"Epilepsy | MedlinePlus." MedlinePlus Trusted Health Information for You, 2017. https://medlineplus.gov/epilepsy.html Accessed 15 February 2023.
- 2"Facts & Statistics About Epilepsy" Epilepsy Foundation, 2019. https://www.epilepsy.com/what-is-epilepsy/statistics Accessed 13 February, 2023.
- 3"Dravet Syndrome." National Organization for Rare Disorders, 2020. https://rarediseases.org/rare-diseases/dravet-syndrome-spectrum/ Accessed 15 February 2023.
- 4"West Syndrome." National Organization for Rare Disorders, 2019. https://rarediseases.org/rare-diseases/west-syndrome/ Accessed 13 February 2023.
- 5"Lennox Gastaut syndrome." National Organization for Rare Disorders, 2020. https://rarediseases.org/rare-diseases/lennox-gastaut-syndrome/ Accessed 15 February 2023.
- 6"Tuberou Sclerosis" National Organization for Rare Disorders, 2020. https://rarediseases.org/rare-diseases/Tuberous%20Sclerosis/ Accessed 15 February 2023.
What are the symptoms of a Seizure?
Seizure symptoms differ greatly by seizure disorder and person by person. They can be subtle or dramatic. Someone affected by a seizure may be unaware the seizure occurred.
- Loss of consciousness or awareness; unresponsiveness
- Temporary confusion; staring
- Tingling or dizziness
- Uncontrollable jerking movements of the arms and legs
- Repetitive motions
- Muscle stiffness; loss of muscle control
- Emotional changes, such as fear, anxiety, or déjà vu
- Loss of bowel or bladder function
- Change in senses (taste, smell, sight, hearing, touch)
- Biting of the tongue
How is it diagnosed?
- A brain wave test (electroencephalogram, EEG) to look for changes in the brain waves
- Blood tests to look for any medical disorders causing the seizures
- CT scan or MRI to look for any abnormal areas in the brain, such as a tumor or infection
- Physical exam and screenings to assess motor, thinking, memory and speech skills, helps determine which areas of brain are affected
The following specialty medications are available at Accredo, a specialty pharmacy for Epilepsy.
Financing Your Care
Financial assistance may be available to help with your medication costs, including manufacturer and community programs. Accredo specialists are available to help find a program that may work for you.
Community Financial Resources
- Epilepsy Foundation Patient Assistance 800-332-1000
- Acthar Patient Assistance Program
- Epidiolex® Copay Savings Program
- Sabril® SharePlus Program
- Vigabatrin (Amneal Vigabatrin Savings Program)
- Vigabatrin (Dr. Reddy’s CoPay Card Programs)
- Vigabatrin (PAR Patient Assistance Program) 833-PAR-HELP
- Vigabatrin (Teva Patient Assistance Programs)
Life-saving specialty medication can be expensive. Learn how the Accredo teams help individuals find ways to afford the medication they need to survive in this video.
There are many organizations that support research and advocacy for Epilepsy . See below for a few of those organizations.
- Epilepsy Foundation
- National Organization for Rare Disorders (NORD)
- Intractable Childhood Epilepsy Alliance
- Child Neurology Foundation
- LGS Foundation Inc.
- Dravet Syndrome Foundation Inc.
- TSC Alliance
Meet the Team
Accredo’s Epilepsy care team is dedicated to serving you and we understand the complexity of your condition. Our expert clinicians are available 24 hours a day, seven days a week to answer any questions.
Why We Do It
Accredo supports patients with chronic and complex conditions and helps them live their best life. Watch our video to learn why we do what we do for our patients.