The Epilepsy Inequality

By: Krupali Chokshi  

In the "Land of the Free" the concept of equality represents the foundation of our beliefs and what we stand for.  We boast that “All Men are Created Equal” and claim to stand against unjust discrimination. We consider ourselves to be an educated society that is constantly developing and progressing for the greater good of humanity.

If this is the case, then how can certain serious diseases, such as Epilepsy, be so misunderstood and stigmatized? In the United States, Epilepsy affects 2.3 million Americans and about 65 million people worldwide. About 150,000 people in the United States are diagnosed with Epilepsy each year and 1 in 3 Americans know someone who has the disease. Despite its prevalence, public awareness of the condition is extremely limited and shallow. It receives much less research funding than needed, and misconceptions about epilepsy often overshadow the truth.

What exactly is Epilepsy?

Epilepsy is a neurological disorder that produces recurring seizures that impact a variety of mental and physical functions. The seizures occur when nerve cells in the brain signal abnormally and cause involuntary changes in a person’s consciousness, movements or actions. Epilepsy can be described as a “spectrum disorder” because the causes, seizure types, and severity levels can vary greatly from person to person.

It is unfortunate that today, epilepsy can greatly limit a person’s school achievements, job opportunities and life experiences in general. Many people mistakenly consider epilepsy and seizures as something they must fear, and that people with epilepsy cannot be valuable employees. 

While there is medicine and treatment for the disease, more than a million people continue to have seizures, which often leaves them dealing with embarrassment, fear and low self-esteem. Those affected by epilepsy have found that hiding their condition saves them from the stigma associated with the condition, but this strategy only hinders treatment, making things worse.

Through The Humanology Project, we hope to eliminate the stigma associated with epilepsy by raising awareness through education. By gaining a holistic perspective on the disease, we can truly understand those affected by the condition and work towards being a healthier and happier society.  

Resources

Baruchin, A. (2007, February 20). Battling Epilepsy and its Stigma. The New York Times. Retrieved September 21, 2013, from http://www.nytimes.com/2007/02/20/health/20epil.html?pagewanted=all&_r=1&

CDC - Epilepsy - Basics - Public Health. (n.d.). Centers for Disease Control and Prevention. Retrieved September 21, 2013, from http://www.cdc.gov/epilepsy/basics/public_health.htm

The History and Stigma of Epilepsy - 2003 - Epilepsia - Wiley Online Library. (n.d.). Wiley Online Library. Retrieved September 21, 2013, from http://onlinelibrary.wiley.com/doi/10.1046/j.1528-1157.44.s.6.2.x/pdf

Thomas, S. V., & Nair, A. (n.d.). Confronting the stigma of epilepsy. National Center for Biotechnology Information. Retrieved September 21, 2013, from http://www.ncbi.nlm.nih.gov/pmc/articles/

Finding the Clues

By: Priyal Sakhuja

Symptoms and signs could be seen as clues used to determine the likely diagnosis for a present illness. Once one learns and becomes familiar with the clues, the mysteries behind the illnesses become a little easier to unravel. Such clues are present for all illnesses, including epilepsy. Learning about which symptoms an epilepsy seizure could produce and how one could assist the person could be very beneficial. Although some seizures come with no warning, early seizure symptoms include visual loss or blurring, dizziness, headache, nausea or numbness. Some signs to look for that indicate one is having an epilepsy seizure include (Mayo Clinic, 2013):

• Staring spells

• Temporary confusion

• Uncontrollable jerking arm and leg movements

• Loss of awareness

These symptoms could vary from person to person, but they tend to be the general trend. In most cases, a person afflicted with epilepsy will tend to have the same type of seizure each time so the symptoms would also be similar. Symptoms also tend to differ between the two types of seizures: partial and generalized (Senelick, 2012).

Partial seizures-

In a partial seizure, which affects one part of the brain, the person would experience the twitching of a finger or fingers, hand, arm, leg, foot, or facial muscles. Speech might also become slurred or incomprehensible and vision might be temporarily impaired. Tingling on one side of the body might also occur.

Generalized seizures-

This type of seizure occurs over all areas of the brain and could cause the person to stare into space or pass out. The muscles could stiffen and the person could be afflicted with jerking leg and arm movements.

Although these symptoms and signs may seem frightening, it is important to know when and how people with epilepsy react while having a seizure. Along with regular dosage of treatment drugs, one can help someone afflicted with epilepsy by offering a strong support system. It is important to ensure that medication is taken on time and the person gets enough sleep since lack of sleep could trigger seizures. It is also beneficial to remain physically active and make healthy life choices. Just piecing the clues together could be life altering for someone afflicted with epilepsy.

Sources:  

1. http://www.mayoclinic.com/health/epilepsy/DS00342

2.http://www.webmd.com/epilepsy/guide/epilepsy-seizure-symptoms.

An International Challenge: Epilepsy in India

By: Japbani Nanda

Statistics are not enough to describe the impact that an illness has on a nation. India, with a population of about 1.3 billion individuals, is the largest democracy in the world. With each day, it is advancing towards further development in all fields. Yet, in the area of dealing with epilepsy, awareness of the illness and treatment options are needed desperately.

In India, about 10 million people suffer from epilepsy, with a prevalence of about 1.9% in rural areas and 0.6% in urban locales. There is a high prevalence of epilepsy among children and young adults. The greater prevalence of epilepsy in rural areas is a testament to the impact of the stigma that surrounds this illness on the levels of treatment that Indians receive. About 95% of people in India who suffer from epilepsy are never treated for it and almost half of the sufferers do not have access to anti-epileptic drugs.

Stigma hinders the Indian population from truly understanding epilepsy. While the physical seizures that are characteristic of epilepsy may seem scary and contribute to this social stigma, epilepsy is not contagious. Yet, people with epilepsy often do not get an education, do not find jobs, and do not get married.

A lack of appropriate medical treatment in many Indian regions precludes patients from being treated. Many cases of epilepsy can be cured while others can be controlled. Additionally, many do not realize they are afflicted because they are not aware of the risk factors, which include consumption of infected pork and unwashed vegetables, and brain injury. Many individuals may not seek treatment because of societal pressure.

In an effort to diminish the stigma that is associated with epilepsy, The Humanology Project hopes to raise awareness of the social issues that are affecting the ill in many countries, including India. The people of countries with a rich culture and thriving possibilities should not be hindered by social stigma if they try to seek out treatment. The first step to proper treatment is a firm understanding of illness and its causes. With a renewed sense of knowledge, the Indian population may be able to erase the dark spots of stigma that have been attached to epilepsy.

References:

Roy, Mrinal K., and Dhiman Das. "Indian Guidelines on Epilepsy." The Association of

             Physicians of India, n.d. Web. 15 Sept. 2013.

Sinha, Kounteya. "Around 95% of Indians with Epilepsy Don't Get Treatment: Study."

             The Times Of India. N.p., 12 Sept. 2012. Web. 15 Sept. 2013.

Catching the Cause

By: Neha Kinariwalla

Epilepsy is actually not a single disease, but multiple disorders that can be caused by many different factors depending on the case. Currently it is believed that there are over thirty different epileptic syndromes and thirty eight different types of seizures (check into the last blog post to clarify the distinction). For over half of the people who have epilepsy, the illness is idiopathic, meaning that there is no identifiable cause to the condition. In the other half, the condition can be a result of various causes. 

1.  Genetic Causes

The hereditary risk is about 5-20%. Defects in genes may not lead directly to epilepsy but they can change how excited the brain can get and make someone more prone to seizures. Genetics are typically related to generalized seizures. Usually the development of epilepsy requires multiple gene abnormalities in conjunction with an environmental trigger. There is a potential to treat people with epilepsy through gene therapy. Science has been advancing very quickly.

2.   Head Trauma

Head injuries have increased drastically over the past decade, with about half a million people in the USA sustaining head injuries major enough to need hospitalization! (D'Ambriosio R., Perucca E., 2004). Although most people with head trauma do not get epilepsy, there are severe cases that result in post-traumatic epilepsy (PTE) . Recovery from this type of seizure can take years due to the fact that brain cells take time to rewire and to grow new connections or replace the ones that were lost from the injury. These weakened connections are prone to seizures and become hyper! 

3.  Infections & Diseases

Parasitic conditions associated with epilepsy is probably the most common and preventable cause of epilepsy in the world (de Boer H., et. al. 2008). Many studies from Latin America have shown that infection of the brain by a pork tapeworm larvae Taenia solium is a cause of epileptic seizures. Neurocysticercosis is a disease of poverty and underdevelopment. When people eat pork that contains cysticeri, there is a high risk for developing the disease. Seizures are  common with multiple lesions, or holes, in the brain. This is a major reason that epilepsy is more common in the developing world than in first world nations. It's quite sad to consider that people who do not have access to proper treatment are the ones who are more prone to the illness.

4. Brain Tumors  

Although brain tumors are rare in the general population, they can often cause seizures.  Both benign and malignant tumors can cause focal seizures depending on where the tumor is located in the brain. It is the irritated part of the brain that usually starts, or induces, the seizure. These are usually difficult to treat. 

5. Poisoning

Seizures can result from lead, carbon monoxide, and many other poisons. Overdoses on street drugs, antidepressants or other medications can also result in seizures.

This list is by no means exhaustive. The causes of epilepsy are many, but unfortunately the result for all of them is the same stigmatized perception by society. In understanding the different types of seizures and causes, we begin to realize that anyone could have a seizure. 10% of Americans will have a seizure at some point in their lives. All it takes is a little more electrical signaling... 

References:

D’Ambrosio R. & Perucca E. "Epilepsy after head injury." Curr Opin Nuerol. 2004 December; 17(6): 731-735.

de Boer HM, Mula M, Sander JW. The global burden and stigma of epilepsy. Epilepsy Behav. 2008 May;12(4):540-6. doi: 10.1016/j.yebeh.2007.12.019. Epub 2008 Feb 14. Review. PubMed PMID: 18280210.

Fisher Robert and Saul Maslah. 2006. “Overview of Epilepsy.” Retrieved July 14, 2013 (http://neurology.stanford.edu/divisions/e_handout.html).

Seizures & Epilepsy. Hope through Research. Retrieved August 19, 2013. (http://www.ninds.nih.gov/disorders/epilepsy/detail_epilepsy.htm).

All American Stigma

By Neha Kinariwalla

I know we all like to think that wrong perceptions of epilepsy are a thing of the past. But the 20th century brought along a new form of cultural fascination. And while much has been learned about the actual causes of epilepsy, there is something to be said about the public idea of the disorder. We may not notice this at first but think back to Walt Disney’s  Snow White and the Seven Dwarfs, featuring a little dwarf named Dopey, had seizures at night.

Not all of the depictions of epilepsy are quite as loveable however. Oliver Stone’s JFK shows a person with epilepsy implicated in the presidential assassination and people with epilepsy are shown in practically all of the television series we see today. Movie characters with epilepsy are often out of their minds, and this contributes to stereotypes. You may think “So? It’s just a movie, I can tell it’s exaggerated!” But there’s a grave problem in this. Epilepsy is multifaceted and a layered disorder. The depth to which the American public understands the disorder is quite shallow, and this leads us to subconsciously link epilepsy to danger.

Maybe it’s because epilepsy looks a bit scary. It seems violent, and it’s the concept that people lose control of their bodies- even if it’s for a split second. When we think of the word seizure itself, it doesn’t have a particularly appealing connotation. To take hold, to capture by force, to grab…

But the first step to overcoming these presumptions is through understanding epilepsy.  Stigma and unfamiliarity of epilepsy is still prominent in the USA. In a study conducted by Austin J.K in 2002, 22% of American adolescents confessed they did not know whether or not epilepsy is a contagious disorder (It’s not! For the record). By bringing these issues to light, we’ll hopefully reduce this All-American Stigma.

Carpe Diem- Seize the day

By: Neha Kinariwalla

Science is the father of knowledge, but opinion breeds ignorance. 

In 400 BCE, Hippocrates wrote the first book on epilepsy, countering arguments that said it was a “curse from the devil”. But this hasn’t stopped mythology from brewing through the years. People with epilepsy were perceived as witches, demons, and were even mentioned in the bible in which Jesus Christ casts a devil from a boy who has seizures.

Science has advanced rapidly, with the advent of electroencephalography and improving methods of brain scans but there is still quite a bit that lay people do not know about epilepsy. 

Epilepsy is a neurological medical condition. It is not a mental disorder! A seizure is actually caused by abnormal electrical discharges in the brain. Brain cells use chemical reactions in order to produce electrical discharges. When the brain is excited more than inhibited, a seizure results (Fisher R., 2006). Epilepsy is the neurological disorder characterized by reoccurrence of these seizures.

Seizures are like onions. They have layers  and there can be many different types. But seizures can't be cured by onions! (This actually was a method that was used in the past)

Seizures fall into two main categories: partial and generalized. Partial seizures have onset in one particular part of the brain. Generalized seizures start throughout the brain and can be classified into six types

1. Absence seizures (petit mal)
2. Myoclonic seizures
3. Tonic seizures
4. Clonic seizures
5. Atonic seizures
6. Tonic-clonic seizures (grand mal).

Thus, seizures can vary from brief lapses of attention (petit mal) to very severe and long convulsions (grand mal) (Jacoby A, 2005). In later articles, we will learn what implications each of these types of seizures can have. 

References:

Fisher Robert and Saul Maslah. 2006. “Overview of Epilepsy.” Retrieved July 14, 2013 (http://neurology.stanford.edu/divisions/e_handout.html)

Jacoby, Ann et. al. 2005. "Epilepsy and social identity: the stigma of a chronic neurological disorder." Lancet Neurol 4(171-78). Retrieved July 14, 2013 (http://www.ncbi.nlm.nih.gov/pubmed/15721827).