Many questions arise when you or someone you love is living with a chronic health disorder. Getting creditable answers to meet your needs becomes very important in managing the issues that may present with epilepsy. Our staff can provide information on resources for respite and child care, adaptive equipment, assistive technology, social and recreational activities, home healthcare and other needs.
The following is a list of questions and resources compiled/recommended by our Epilepsy Services team:
- What is epilepsy? Epilepsy is a generic term for a variety of seizure disorders. A person with recurring seizures is said to have epilepsy. A seizure is a brief disturbance in the electrical activity of the brain. Seizures happen when the electrical system of the brain malfunctions. Instead of discharging electrical energy in a controlled manner, the brain cells keep firing. The result may be a surge of energy through the brain, causing unconsciousness and contractions of the muscles. (Read “Seizures & Epilepsy” – includes First Aid chart for seizures).
- What causes epilepsy? In nearly 70% of cases, the cause is unknown. The most common causes for the remaining 30% include: head trauma resulting from automobile accidents, gunshot wounds and sports accidents; brain tumor and stroke; poisoning, such as lead or alcohol; infection and maternal injury. Some rare forms are genetic. Epilepsy is never contagious – it’s impossible to get it from or give it to another person.
- How is epilepsy treated? Epilepsy may be treated with medications, surgery, electrical stimulation therapy or a special diet. Medication therapy is by far the most common and is usually the first to be tried. A number of epilepsy medications are currently available. These medications control different types of seizures. A seizure-preventing medication (also known as antiepileptic or anticonvulsant drug) won’t work properly until it reaches a certain level in the blood stream and that blood level must be maintained. It is important to follow the doctor’s instructions very carefully as to when and how much medication should be taken. The goal is to keep the blood level high enough to prevent the seizures, but not so high that it causes unwelcome side effects.
Taking medications in the manner prescribed by your physician is essential to good seizure management. Sometimes this is difficult to do when there is no prescription drug coverage and there are multiple medications and/or very costly ones, or if you have a gap between insurance providers. Abilities Network has limited funds to assist individuals on a temporary basis. Links to additional resources for medication assistance are listed below.
- Medicare Access for Patients Rx helps answer questions for people with Medicare in regards to Medicare Prescription Drug Coverage.
- The HealthWell Foundation addresses the needs of individuals with insurance who cannot afford their copayments, coinsurance, and premiums for important medical treatments
- Partnerships for Prescription Assistance (PPA) helps qualifying patients without prescription drug coverage to get the medicines they need through the program that is right for them.
- Together Rx Access helps patients without prescription drug coverage to get immediate savings on hundreds of brand-name and generic prescription products at many pharmacies.
- www.needymeds.org NeedyMeds is a 501(c)(3) national non-profit information resource dedicated to helping people locate assistance programs to help them afford their medications and other healthcare costs.
Finding insurance is easier than it has been in the past, but you may still have some questions about insurance for people with epilepsy. Some resources that might help include:
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When seizures are difficult to diagnose or do not respond to standard therapy, a neurologist who specializes in epilepsy, called an epileptologist, should be consulted. The epileptologist may be found in different locations – at hospitals, group or private practices, academic teaching hospitals or specialized epilepsy centers.
EFCR does not recommend or endorse individual physicians, specialized epilepsy centers or other health care professionals.
- Highlights from the Hill is a compressed update of news and views from Washington D.C., on current legislation and issues faced by those affected by epilepsy, published by the Epilepsy Foundation of America.
- The Americans with Disabilities Act website provides general information about the act and a Guide to Disability Rights Laws.
- The Jeanne A. Carpenter Epilepsy Legal Defense Fund has been created to help people with epilepsy fight discrimination.