One Individual’s Perspective
There are many people who can mistakenly confuse the definition of epilepsy by calling it a disorder , and not a disease: 1) SSA (Social Security Administration); sometimes granting SSDI (Supplemental Security Disability Income) to people requires a broad and well accepted definition from the medical industry. More importance could possibly be placed on those with an illness actually named a disease. 2) Insurance companies; insurance claims have been dramatically increasing and the insurance companies suffer losses. Providing the insurance holder with 100% reimbursement is costly. Often, some forms of testing /treatment may be deemed too expensive. 3) Pharmaceutical companies; the need to produce a drug to control seizures, rather than one to cure them, is less difficult. There are currently close to 20 drugs sold as seizure medications ( not including generics), many sold around the world. Others are in progress. They more than often accomplish their initial purpose…controlling seizures. As more medications are developed, better control of seizures can be increased. Pharmaceutical companies do accomplish a goal—trying to improve treatment and reducing overall costs to the patient.
Epilepsy can be labeled a disease for the following reasons:
1) Epilepsy can affect pregnancy
According to the Mayo Clinic Staff, “Women who have epilepsy face a higher risk of pregnancy-related complications, including severe morning sickness, anemia, vaginal bleeding, premature separation of the placenta from the uterus, high blood pressure , excess protein in the urine, a low birth rate baby, and premature birth”.
“Beyond the effects of medications, babies born to mothers who have epilepsy also have a slightly higher risk of developing seizures as they get older. Other problems may include minor birth defects that affect the baby’s appearance , such as wide-set eyes or a short upper lip. Developmental delays are possible as well”.
While these could be listed as the worst case scenario, this does not cover the side effects of medications. Some are not prescribed to pregnant women as a result. Two good articles to read are, “Seizure Medications & a Healthy Pregnancy” and “Seizure drugs tied to pregnancy risks”.
2) Epilepsy can be hereditary
According to an article, ”Is Epilepsy Hereditary”, by Nannette Richford, “Idiopathic (with an unknown cause) epilepsy may be hereditary. The same type of epilepsy occurs more frequently in family members”. “Epilepsy occurs at a rate of 2% in the general population. If the father has epilepsy, the chances of children having epilepsy is raised slightly. If the mother has epilepsy, the rate is increased to 5%. The risk increases slightly above 5% if both parents have epilepsy”.
The article, “Epilepsy Family Study of Columbia University”, states, “The risk of epilepsy is genetic in some individuals and non genetic in others”. “A single epilepsy syndrome may be caused by different genes in different families”. “Over the last 10 years, 12 genes that influence risk for non-acquired forms of epilepsy have been identified”. “In the close relatives (parents, brothers, sisters, and children) of people with generalized epilepsy, the risk of epilepsy is about four times as high as the general population, whereas in the close relatives of people with localization-related (partial or focal) epilepsy, the risk is about two times as high as in the general population”.
According to an article, “Seizures”, by Sydney Louis and Elaine Jones, under “Inherited disorders”, “Some types of seizures are inherited. One type, namely Juvenile Myoclonic Epilepsy (JME), has been related to one or perhaps two chromosomes”. “The generalized epilepsies have a substantial inherited component-these include petit mal (generalized absence), generalized Grand mal (Tonic –clonic) epilepsy, amongst others”.
Last article, “Is Epilepsy Inherited?”, from epilepsy.com, states, “Those who do develop epilepsy are more likely to have a history of seizures in their family”. “Primary generalized seizures (epilepsy) are more likely to involve genetic factors…”. “Epilepsy is more likely to occur in a brother or sister if the child with epilepsy has primary generalized seizures”.
There are many more articles agreeing with these facts. Some, however, use words such as “indicates”, “suggests”, or “there may be”. These articles are reluctant to agree that the information is conclusive. Maybe they’re concerned that fear will arise among potential parents who have epilepsy. Potential parents with epilepsy should ask their Neurologists more questions and get their advice.
3) Epilepsy can cause brain damage
According to an article, “Meeting News: Do Seizures Damage the Brain?”, by Jack M. Parent, M.D., “The evidence suggests that these seizures (isolated, brief seizures) do have a negative effect and possibly result in loss of specific brain cells”. “ Recurring seizures may contribute to nerve cell injury in the brain, and this may be associated with declines in cognitive function and quality of life”. “Prolonged seizures are clearly capable of injuring the brain”.
“Thinking, Memory, & Epilepsy” is the title of a section from the website, epilepsy.com. “If you have mostly primary generalized seizures, like absence, myoclonic, or tonic-clonic (grand mal) seizures, you are much less likely to have problems with your thinking than someone who has partial-onset seizures (seizures that begin in one area of the brain, often the temporal lobe). Some people with epilepsy of this kind do experience problems with their memory, language, or other kinds of thinking”.
“Seizures, especially ones that start in the temporal lobe, can cause a major blow to the hippocampus. The hippocampus is very sensitive to changes in brain activity. If seizures starting here go untreated, the hippocampus starts to harden and shrink. Then it is as if the librarian has gone on strike. Information may be stored, but in a disorganized way”.
The Epilepsy Society has also published information related to this topic. Their section, “Epilepsy and memory”, carries it a step further. It describes the problem under the heading “Seizures”. It states, “There may be a higher chance of having memory problems / difficulties if you take higher doses of medication or more than one type of AED (anti-epileptic drug). Memory difficulties rarely disappear completely following drug changes”.
Under the heading “Surgery”, it states, “Even if surgery stops your seizures, you may have memory problems afterwards. This is most common with surgery to the temporal lobe”.
Epilepsy Society uses the phrase, “rarely disappear”. To be a little more blunt, an article entitled, “What are the Treatments for Epilepsy?” written by Elizabeth Stannard Gremisch states, “Patients with epilepsy have recurrent seizures, which are changes in behavior and functioning due to abnormal electrical activity in the brain. With epilepsy, these electrical abnormalities result from permanent changes to the tissue in the brain”.
An article titled, “On My Mind: Temporal Lobe Epilepsy”, by Joseph Sirven, MD, Editor-in-Chief of epilepsy.com, states, “The overall prognosis for patients with drug resistant medial temporal lobe epilepsy includes a higher risk for memory and mood difficulties. This in turn leads to impairment in quality of life and an increased risk for death, as observed in patients who have frequent seizures failing to respond to treatment”.
Another article not only discusses the reduction in memory and thinking abilities, but also the fact that the time span and seizure medications are also contributing factors. “Cognition across the lifespan : Antiepileptic drugs, epilepsy, or both?”. The study, composed by Bruce Hermann, Kimford Meador, William Gaillard, and Joyce Cramer, states, “Cognition is a general term that includes attention, I.Q., language skills, as well as verbal and memory (visual). So when someone complains of “memory”, there are many parts that can be involved. In temporal lobe epilepsy (TLE), brain structures involved in seizures are close to memory centers in the brain and so can be affected by seizures. Seizure medications are more likely to have effects at higher doses, in combination with other A.E.D.s, and with rapid increase in dose”.
“In general, it is thought that the earlier the age of onset seizures, longer duration of seizures over time, prolonged unremitting seizures (status epilepticus), and increased exposure to A.E.D.s are more likely to be associated with cognitive problems”.
Other articles do discuss the age at which the first seizure occurs. “Age of Epilepsy Onset Linked to Cognitive Impairment”, from a journal called Epilepsia, was written by Kati Rantonen and Kai Eriksson. It states, “Age of seizure onset may be a significant predictor of cognitive impairment in preschool children with epilepsy”.
4) Epilepsy can be progressive
Much like the past reasons stated, more inconclusive words or phrases are used in explanations. More phrases, such as “may occur”, “strong possibility”, “it has become apparent”, and “we can infer” can show the interest of the writers to not be too direct. Maybe it could help them write while knowing the possibility of not being 100% correct. It could also emphasize their concern for not creating a high level of anxiety, stress, or fear. The main goal should be educating people with epilepsy and informing them of the proper steps to take.
According to an article titled, “Is Epilepsy a Progressive Disease?”, by William H. Theodore, M.D., “Neuropsychological studies indicate that cognitive function declines over time in adults with temporal lobe epilepsy, and the decline seems to occur more rapidly than in normal controls”.
The hippocampus is the part of the brain located on both the left and right side. It is positioned within the temporal lobe of the brain. Several abbreviations are used in articles, e.g. : HF (Hippocampal Formation); HA (Hippocampal Atrophy); and HS (Hippocampal Sclerosis). HF volume will decrease and HA increase with epilepsy duration. The condition, HS, is a type of HA where atrophy is distributed more laterally and diffusely.
To continue with the article, “The combined effects of epilepsy duration and febrile seizures (brought on by a fever in infants or small children) suggest that, after an initial insult, progressive HF damage may occur in patients with persistent seizures”.
“It is also possible that patients with HF atrophy at seizure onset will be more likely to develop uncontrolled epilepsy”. “We can at best infer a relation between epilepsy duration, or in some studies, seizure number, and progressive structural loss or functional impairment”.
“It is clear, however, that at least some forms of epilepsy are progressive, including common syndromes, such as medial temporal lobe epilepsy with hippocampal sclerosis”.
Another article includes more technical terminology. It was taken from a magazine called THE LANCET. “Is epilepsy a progressive disorder? Prospects for new therapeutic approaches in temporal lobe epilepsy”. Written by Dr. Asla Pitkamen and Thomas P. Sutula, it states, “During the past decade, it has become apparent that neural circuits undergo activity-dependent reorganization. In pathological disorders with recurring episodes of excessive neural activity, such as temporal lobe epilepsy, brain circuits can undergo continual remodeling”. (A way of beating around the bush; since around the year of 2000, doctors can now conclude that damage to the brain as a result of TLE could be progressive).
“Seizure-induced remodeling implies that after a diagnosis of epilepsy, recurring seizures can cause continual neural reorganization and potentially contribute to progressive severity of the epilepsy and to cognitive and behavioral consequences”. This is a lot more explanatory, or awakening, but may be stated in a way to sound less threatening or hazardous. It is confirming what many articles will say, that epilepsy seizures can increase in number and the increased number could change your thinking and behavior.
Terms you will often encounter involve which part of your temporal lobe is related to your specific epilepsy. Left temporal lobe is on the left side of your body; right temporal lobe is on the right side of your body. That is not to be confused with LTLE (Lateral Temporal Lobe Epilepsy) and MTLE (Mesial/Medial Temporal Lobe Epilepsy). LTLE affects the outer part of the temporal lobe and MTLE affects the deep inner part of the temporal lobe. MTLE includes the hippocampus . It often doesn’t matter which is your condition. Treatments are the same. Seizures can also easily spread from one to the other. Characteristics of MTLE can be the same as those of LTLE, and vice-versa.
Some may also be uncertain as to why the part of the brain known as the “hippocampus” may continue to appear in an article. It is a small part (looks like a seahorse), but a major component, of the brain. It helps regulate emotions and memory…both short term and long term. It’s also one of the brain areas showing damage in Alzheimer’s disease.
5) Epilepsy can be fatal
Many people with epilepsy haven’t heard of SUDEP…Sudden Unexpected Death in Epilepsy. Most Neurologists would rather not tell their patients. It would definitely create fear in most, but unless they are informed, they will not know to be more alert and possibly take more actions. According to an organization called Medscape, “Patients with epilepsy have a mortality rate significantly higher than those of the general population. The standardized mortality rate (SMR) is shown to be 1.6-9.3 times higher in this population. The causes of death can include the following: accidents during epileptic attack (trauma, drowning, burning, choking); suicide / depression; treatment-related death; and SUDEP. The U.S. FDA developed a criteria for SUDEP in 1993:
Elson So states that the risk of SUDEP is one in 3000 over a one year period. For a person with poorly controlled seizures, the risk is one in 100.
Epilepsy.com states that “SUDEP has been estimated to account for 15-20% of all causes of death in people with epilepsy”.
According to an article entitled, “Epilepsy death information needed” submitted by the Press Association on Aug. 31, 2011, two teenagers, each from a different family, died in bed after their seizures. They were not warned, nor even aware of, this risk because of the “potential for causing distress”. The parents “have called to an end of this dangerous practice of withholding information on the risk of sudden deaths”.
6) Epilepsy is incurable
The first recorded case goes back 3000 years, with the ancient Babylonians. There are many treatments, but no cure. The term “absence seizures” is another name for petit mal (PET-ee-mahl) seizures. Having a first seizure between ages 4 and 14 could be the most promising (or least depressing). According to epilepsy.com, “In nearly 70% of cases, absence seizures stop by age 18. Children who develop absence seizures before age 9 are much more likely to outgrow them than children whose absence seizures start after age 10”. (These are outgrown, not cured).
According to WebMD, “Idiopathic (cause unknown) Partial Epilepsy begins in childhood (between ages 5 and 8) and may have a family history. Also known as benign focal epilepsy of childhood (BFEC), this is considered one of the mildest types of epilepsy. It is almost always outgrown by puberty and is never diagnosed in adults”.
Two articles on the internet explain in greater detail: “Personal Health; Childhood epilepsy is no longer a life sentence”, and “Will My Child Outgrow His Seizures?-About Kids Health”.
7) Epilepsy is called a disease
Many people believe that a neurological condition has to be contagious to be called a disease. ( Quite often, you will see other words used…infectious, communicable, transmissible). While this applies to many conditions, it is not mandatory to be named a disease. Some examples of those that are contagious are Meningitis, Encephalitis, and Reye Syndrome. However, there are several neurological conditions that are non-contagious. These include M.S., M.D., Alzheimer’s Disease, Parkinson’s Disease, Huntington’s Disease, and A.L.S. ( Lou Gehrig’s Disease).
Many articles use the term in their titles and paragraphs:
Also, on TV:
8) Epilepsy meets the definition of a disease
There are definitions of a disease which can describe epilepsy, and definitions of epilepsy calling it a disease.
Disease: a medical condition that has a known etiology , time, and course prognosis.
“Etiology” ,or cause, is known for 30% of the cases ; many other causes for seizures can be reasoned. Time span is obvious for almost all cases…a lifetime. Course prognosis, or forecasting of probable course and outcome, is also not difficult to predict.
Disease: a relative permanence, non-subjectivity, and invariance of symptoms and causation beyond psychiatric illness.
As stated before, no one can doubt the permanence; “non-subjectivity” (not perceived; independent of the mind): we know that we are not perceiving it…ask anyone watching someone have a seizure. “Invariance” (constant/ not changing) can be reasoned. Joseph Sirven, M.D. states, “The presentation of medial temporal lobe epilepsy is fairly consistent from individual to individual”. For most cases, we know that it will stay the same or get worse. “Beyond psychiatric illness”: an epileptic doesn’t need a psychiatrist, he needs a neurologist!
There are many definitions of epilepsy. Most do not call it a disease. Many also don’t label it as being a disorder or a disease. You will see phrases such as, “abnormal motor phenomena”, “psychic or sensory disturbances”, the brain is “firing electrical impulses”, or having “disturbances of the electrical activity ”. Some can be more simple, such as “two or more unprovoked seizures”.
One of the most dramatic definitions comes from “The Free Dictionary”, by Farlex. It has “The Legal Definition of Epilepsy”, which states:
“A disease of the brain, which occurs in paroxysms ( sudden, violent outbursts; fit of violent action or emotion) , with uncertain intervals between them. These paroxysms are characterized by the loss of sensation, and convulsive motions of the muscles. When long continued and violent, this disease is very apt to end in dementia. It gradually destroys the memory, and impairs the intellect, and is one of the causes of an unsound mind”.
As far back as 1892 (when the condition was the same as today, even though modern treatment nor medications were available), an author named B. Sachs wrote an article giving a clear definition of epilepsy. In it he states, “The disease is a veritable scourge that leaves its indelible mark upon the victim, often attacking him at an early age, unfitting him for the serious work of life and blighting all hopes dependent upon him”.
The purpose of this article was not only to educate, but also to create an extreme concern over what to expect during a lifetime of handling epilepsy. Many people are not completely aware of their full diagnosis, what the consequences will be over periods of years and decades, if they are being treated 100% accurately regarding their condition, how to spend their own time monitoring their condition, and what steps they can take on their own.
Last Reviewed: 11/15/11
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