Epilepsy Foundation of Metropolitan New York
The Epilepsy Foundation of Metropolitan New York (EFMNY) has been at the heart of the NYC epilepsy community for more than 50 years and is New York City’s only specialized organization dedicated to epilepsy education, awareness, and advocacy with individualized services such as counseling and vocational supports. Since 1967 thousands of people with epilepsy and their families have benefited from the comprehensive social and educational services offered by the EFMNY. Staffed with professionals from the medical, social work, vocational counseling, and psychological professions, EFMNY provides a wide variety of services and supports to persons with epilepsy, their families, and the community. EFMNY, a 501(c)3 non-profit agency, is certified by New York State and maintains contractual agreements with New York City, New York State, and the Epilepsy Coalition of New York State. EFMNY became part of the YAI Network in 2019.
Epilepsy is a disease of the brain that predisposes a person to recurrent, unprovoked seizures. Seizures are sudden, transient disruptions of brain function due to abnormal and excessive electrical discharges in brain cells. Epileptic seizures can vary in type and severity and can affect behavior, movements, feelings, and consciousness. Epilepsy is typically diagnosed after someone has had two or more seizures that cannot be attributed to a known medical condition. While there are many possible causes for epilepsy, for more than half of all cases, the cause is unknown.
Epilepsy is seen in children who have no other problems; however, epilepsy is common in children who have developmental disabilities. Approximately 30% of children with epilepsy have other developmental disabilities. In one study, children with intellectual/developmental disability (I/DD) and cerebral palsy had a 35% chance of developing epilepsy, children with I/DD alone had an 8% chance, and children with a brain injury occurring after birth had s 75% chance. In general, the risk of a child with a developmental disability experiencing an unprovoked seizure by age 5 is about four times greater than in the general population.
There are many different types of seizures. In one study that looked at different types of seizures in children with developmental disabilities the most common seizure type was generalized (tonic-clonic or grand mal). Some of the children also had partial seizures, either simple partial or complex partial. There was also a group of children who had more than one type of seizure.
Whether your child always has epilepsy will be subject to different factors. First, the diagnosis should be clarified. Epilepsy is defined as at least two seizures occurring more than 24 hours apart without acute provocation. Therefore, if your child had one seizure or had only febrile seizures, she does not have epilepsy. Epilepsy can be described by seizure type and also by syndrome. Prognosis, or whether your child outgrows epilepsy, will depend most on the epilepsy syndrome. Seizure syndrome is based on the age of onset of seizures, electroencephalographic (EEG) pattern, and seizure type.
Some epilepsy syndromes are “benign,” meaning that the seizures will remit within a certain age range. There are also some epilepsy syndromes that rarely remit. If your child remains seizure-free for two years on medication, you should consult with a doctor to discuss options regarding their medication. Research shows that a percentage of children will remain seizure-free when medications are withdrawn. Some children have better outcomes than others including those with epilepsy of cryptogenic or unknown origin, and children with normal EEGs.
- Chris O’Dell R.N. – Montefiore Epilepsy Management Center
You cannot be fired for having epilepsy. The Americans with Disabilities Act (ADA) protects the employment of a qualified individual with a disability who can perform the essential functions of the job with or without reasonable accommodations. In addition, many states and cities prohibit employment discrimination on the basis on an individual’s disability.
To be afforded ADA protection, an individual must have a disability such as a physical or mental impairment, or must be regarded as having such an impairment. Most courts have determined that epilepsy is a disability under the ADA.
If you are an individual with a disability, you must be able to perform the essential functions of your job, with or without reasonable accommodations, provided by your employer. If you cannot perform the essential functions of your job with or without reasonable accommodations, then your employment may not be protected under the ADA.
State and local laws generally provide employment discrimination protection similar to that of the ADA, however, the definition of a disability varies by state and locally.
I’m looking for a new job, but I’m afraid to tell my potential employer that I have epilepsy. What should I do?
Deciding when to tell a potential or actual employer that you have epilepsy is a personal choice. Some people choose to disclose their epilepsy during the interview process, while others do so after they have been offered a job but before they begin work. Others choose to wait until they have begun working. It is important to take into consideration your personal safety and your comfort level. Although many people believe that it is better to not disclose their epilepsy until a later date, the pattern and severity of each individual's seizures must be taken into consideration to insure personal safety when deciding when to disclose. Employer and coworker education is key to their understanding and acceptance. Here are three possible scenarios:
You are at an interview and wish to disclose your epilepsy immediately.
Remember that your productive capacity is the major issue; not epilepsy. Defer your disclosure until your competence for the prospective job has been discussed and you have developed a good rapport with the potential employer. Once you feel comfortable that you’ve established yourself as a good candidate, introduce your epilepsy: “I want to be forthright and honest with you, since I’m not the kind of person to withhold information. I occasionally have seizures, but they do not interfere with my work routine.” If you have worked previously you can add that in prior jobs your seizures have not decreased your productivity. Encourage your employer to ask questions about epilepsy and even suggest that they and/or you contact an agency such as the Epilepsy Foundation of Metropolitan New York to find out more information. Conclude the disclosure by reiterating your high degree of motivation and commitment to work.
You have decided not to disclose during the interview and have been offered a job, but wish to disclose before or upon starting work. It is possible that the employer may feel a sense of distrust since this issue was not discussed previously. In this case, you might say something like the following: “I have something to tell you which I was anxious about discussing with you at the time of my interview. Although I know epilepsy will not affect my ability to perform my job, there are so many misconceptions about this condition that I didn’t want to jeopardize my candidacy.” You can acknowledge the employer's possible dilemma by saying words such as: “I hope this will not create difficulties. At the same time, I hope you understand my reluctance to reveal this condition.”
Your seizure pattern is such that you feel confident about being able to work a substantial period of time and remain seizure-free. For this reason, you wish to postpone disclosure until you have established a pattern of productivity and positive relationships at work. In this case, you may want to introduce your condition in one of the following ways:
“I really enjoy working with you, and I was reluctant to discuss my condition due to so many misconceptions.”
“I have epilepsy and, although a seizure hasn’t on this job occurred yet, at some point I may have one.”
“When I have a seizure, the following things usually happen…” (explain your seizures in a factual manner)