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The idea is simple. Let’s teach each other about each other. About our health and wellbeing. And about our illnesses. Furthermore, let's dispense this knowledge to our surroundings. Because an illness changes with perception, and this perception can make all the difference in the way we live.

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Epilepsy

Stigma and Treatment in Epilepsy- When Surgery is Actually the Best Option

Stephanie Tuminello

By: Stephanie Tuminello 

              Patients and doctors alike oftentimes consider surgery the last resort in epilepsy treatment. This is because of how radical a method of treatment this is considered compared to medication. But the fact of the matter is that all cases of epilepsy are different and that sometimes medication alone is not effective, and, moreover, that sometimes even if medication is working to suppress seizures surgery may work better or even be curative. In actuality surgery should, in some cases, be considered the first option, not the last.

            The method of treatment a doctors and his/her patient chooses is ultimately based upon the patient’s specific illness. If seizures occur in one specific area of the brain that can be easily removed this patient is a prime candidate for surgery. Also, if epilepsy is being caused by growth, tumor, lesion, or cyst in the brain that is not responsive to medication surgery to remove it might be the best option. As with any surgery age, general health, and severity of illness are important factors to take into consideration. 

            There are different types of surgery for epileptics. Focal resection is the act of removing the part of the brain where the seizures originate. This type of surgery is only effective when seizures originate in only one part of the brain, usually the temporal lobe.  A hemispherectomy is more invasive and requires removing almost the entire side of the brain. This form of surgery is used less often but for those patinets to need it in order to eliminate the area of the brain causing seizures. Lastly, a corpus callostomy is when brain surgery is performed to stop the pathways in which seizures spread, confining the seizure to a smaller part of the brain. Each form of epilepsy surgery, like any surgery, have their own risks associated with it, but for many people surgery is the way in which they can eliminate or control their illness in order to live their lives seizure free.

 

References

 

John Hopkins Univeristy (n.d.). Surgery for Seizures & Epilepsy. Retrieved 3/8/14

            from http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/epilepsy/treatment/surgery/

The State of Stigma

Stephanie Tuminello

By: Stephanie Tuminello

            In a society as seemingly advanced as ours, it can sometimes take us by surprise that stigma and prejudice still exist. But ignorance propagates stigma, and this is especially the case in epilepsy.  Thus the best way to combat this stigma is through education and awareness.

            From a social worker’s perspective, the best way to do this is by providing information and training programs with educational materials. Social work is needed in institutions such as schools, even daycares, as there have been cases where children have been turned away because they institutions have claimed they did not have the “proper equipment” to handle epileptic children.

            There needs to be more education on a governmental level as well. Up until 1956 there were states which would not legally allow epileptic people to marry (1970 in the UK). In Sweden there were actually eugenic sterilization programs all the way up until 1975! Thankfully things have come a long way, with the help of agencies and programs such as The Global Campaign Against Epilepsy of the World Health Organization and other Epilepsy Associations.

            Epilepsy also needs to be more prominent in the media. Other, less common conditions have celebrities who speak out against the stigma associated with them, such as Ronald Reagan, who speaks for Alzheimer’s and Micheal J. Fox, who speaks for Parkinsons. Only recently has any one of public interest come forward to speak out against epilepsy stigma. Greg Grunbery, of the t.v. show “Heros” has become an epilepsy advocate in honor of his son Jake and his struggles.

            Lastly, people struggling with epilepsy most often benefit through education of their illness. One young man had the experience that after educating his classmates about his condition, what it was and what could be done during a seizure, that his classmates were genuinely concerned and sought to be supportive. 

            Therefore, in conclusion, there has been great progress with eliminating epilepsy stigma but there is still a long way to go. The best means is through education on multiple fronts, for when you eliminate the ignorance behind it you consequently eliminate the stigma.

 

Reference

 

Andrew N. Wilner. Epilepsy in 2010- Does Stigma Still Exist? Medscape. Jul 29, 2010

Noise of the Neurons

Priyal Sakhuja

By Priyal Sakhuja

Imagine sitting in a classroom at school or with your friends at lunch, trying to go about your normal day-to-day activities, but you can’t seem to focus. Your mind doesn’t let you. You start to zone out and you wind up staring into the distance. This could happen numerous times a day and you might not even realize it. Externally, it may seem like nothing happened, but if only you could hear your brain, the noise of the neurons might tell you something quite different.

The abnormal electrical discharges would actually tell you that the person is having a seizure.  But how is it possible to hear the sound of a neuron? Josef Parvizi, a Stanford neuroscientist and epilepsy specialist, collaborated with his colleague Chris Chafe, a music researcher at Stanford, to develop the brain stethoscope. This device could could convert brain waves and their electrical discharges into an audio recording of what’s going on inside the brain. Unlike grand mal seizures, which cause convulsions, this type of petit mal seizure is more subtle, and thus, the brain stethoscope allows one to gain a deeper insight into the activities of the brain (Slack, 2014).

So how does it work? The stethoscope detects brain wave activity using a pair of wearable electrodes that sense electrical emissions from the neurons beneath them. The signals chosen by Chafe are then converted to sounds that are similar to the tone of a human voice. The “singing” of neurons that is heard allows one to identify the presence and intensity of seizure activity. A more intensified and disoriented noise is often identifiable during a seizure, while the end of a seizure is characterized by slower and deeper noises, depicting a “tired” brain.  

It’s truly amazing to see the advancements being made by medical science today and the leaps scientists are taking to achieve the unimaginable. It is, in fact, inventions such as these that will allow medical knowledge to spread to even the rural areas of India, where seizures are often undetected. Until now, the only reliable way to learn whether one was having a seizure was to administer an electroencephalogram (EEG), which converts electrical activity to waveforms that are then interpreted by doctors. But for many people in India, this is not a viable option. However, the brain stethoscope will soon become a popular alternative for even the most untrained people to listen to brain activity and determine whether a seizure is occurring. These noises of the neurons may actually bring us another step further to unraveling the mystery of seizures.


References:

Slack, Gordy. (2014, March 28). “Hearing a Seizure’s Song.” Discover. Available:

           http://discovermagazine.com/2014/may/6-symphony-for-a-seizure


A Brighter Picture

Naila Kabiraj

By Stephanie Tuminello

 

            Conventionally, epilepsy has been treated with a variety of drug alternatives. These drugs are aimed at controlling seizures, and while most are very effective they all have unfortunate side effects including tiredness, nausea, blurred vision, weight loss, weight gain, rashes, and insomnia. Because of this, health care providers seek alternative therapies. Art therapy is one promising example. By reducing the stress of epilepsy patients, art therapy has been shown to indirectly lower seizure frequency independent of any medication.

            Developed in the 1940s, art therapy is not used to treat epilepsy alone. It operates on the idea that creative expression helps to resolve internal conflicts, increase self-esteem and increase self-awareness, and in doing so relieves some of the stress of the patient. Art therapists receive training in both art and psychotherapy so as to be better able to help their patients. Oftentimes, art therapists can be part of a team of health care providers including physicians, psychologists, nurses, and mental health practitioners.

            For epilepsy patients, art therapy will usually take place over a number of sessions. The form of creative expression can vary and can be either drawing, painting, or sculpting. Art therapy can help people with epilepsy communicate their feelings, which they otherwise would not have been able to put into words. It may also help them learn how to better relate to other people, something that the stigma surrounding their condition might otherwise prevent. The art itself evolves over numerous sessions becoming something that opens the lines of communication between the artist and the therapist. Art therapy has been seen to be especially beneficial to young people with epilepsy in helping them make the transition from living a more dependent lifestyle with their parents to a more autonomous one.

          Epileptic artists have created a multitude of awe-inspiring art, both associated with and independent of their medical condition.<span>&nbsp; </span>Below is a link to an online gallery of some of this artwork.

http://www.flickr.com/photos/epilepsysociety/collections/72157629700291003/

            In this way art can be both liberating and healthy for people living with epilepsy, with amazing results. Equally importantly, it can help epilepsy patients by reducing the stigma associated with condition as viewers of their artwork can relate on the most basic, primal levels to the emotions and themes being expressed, so that all and all art therapy is an alternative treatment method of great value.

 

References

(2014). Epilepsy Drugs to Treat Seizures. WebMD. Retrieved March 3, 2014 from http://www.webmd.com/epilepsy/medications-treat-seizures

 

(2014). Art Therapy. Epilepsy.com. Retrieved March 3. 2104 from  https://www.epilepsy.com/epilepsy/treat_art_therapy

Mind Over Matter

Priyal Sakhuja

By Priyal Sakhuja

Take a deep breath in, raise your hands overhead, arms straight, and reach toward the sky with your fingertips. Find your center and feel the essence of your body. That’s yoga, the practice of uniting the mind, body, and spirit. It’s the art of creating balance through developing strength and flexibility. Yoga has recently become an increasingly popular form of exercise for many in the Western world, but its origins lie in ancient Indian philosophies and texts such as the Rig-Veda.  The word yoga itself comes from the Sanskrit word, “yuj,” which means yoking, or a team of oxen (Ann, 2014). Thus, yoga can be interpreted as a union of sorts. So how can this ancient practice, which has recently become an increasingly modern form of therapy and fitness, be beneficial for epileptics?

Epileptologist, Dr. Nandan Yardi, head of the Yardi Epilepsy Clinic in Kothrud, Pune, India explains that seizures are caused by imbalances in the physical and psychological systems or the union of these systems in the body. This is where yoga and its various forms come in, which could become a key step in restoring the balance between the mind and body (“Yoga for Epileptic Seizure Control”).

Pranayama or Deep Diaphragmatic Breathing

It is important for people who are having a seizure to catch and hold their breath to cause changes in metabolism, blood flow, and oxygen levels in the brain. Pranayama, or deep breathing, helps bring about normal respiration and reduce the chances of going into a seizure or can even stop seizures before they are in full effect.

Asanas or Postures 

Postures, or “asanas” are integral to restoring balance to the body and metabolic systems. This is because postures increase physical stamina which helps develop improved strength and flexibility. They are also known to calm the nervous system, which contributes to increased mental strength. Using asanas as physical exercise allows for improved circulation, respiration, and concentration, thus decreasing the chances of having a seizure.

Dhyana or Meditation

Since stress is a major trigger, meditating, or calming the mind is an important method for controlling seizures. Dhyana improves blood flow to the brain and decreases production of stress hormones while increasing production of essential neurotransmitters. Increased levels of neurotransmitters such as serotonin substantially calm the nervous system. Meditation is the key to restoring the balance between the mind and the body.

In 1996, The Indian Journal of Medical Research published the effects of “Sahaja Yoga” on seizure control. While the study was not very conclusive, its results were still quite promising. In the study, a group of patients with epilepsy who practiced “Sahaja Yoga” witnessed an 86 percent decrease in their frequency of seizures. While yoga might not be a cure to seizures, it is certainly an encouraging form of alternative medicine that could only benefit the body in various ways. Although yoga is certainly becoming more popular in recent years, it has proved to be the master of unifying our mind, body, and soul for centuries in ancient India. Yoga is a healthy lifestyle that allows one to get away from the chaos that work, family, relationships, or health issues may bring about. It teaches you how to focus on you. So give it a try. Do it with your loved ones. And remember, mind over matter.

References:

Langley, Zoe. “Yoga for Epileptic Seizure Control.”  Online. <http://hinduism.about.com/od/meditationyoga/a/Yoga-For-Epileptic-Seizure-Control.htm>

Pizer, Ann. (January 2, 2014). “What is Yoga?” Online. <http://yoga.about.com/od/beginningyoga/a/whatisyoga.htm>

Potential Treatment Options for Epilepsy Patients

Naila Kabiraj

By: Tik Yee Lau

Before getting treated for epilepsy, it is important for the physician to confirm that the diagnosis of epilepsy is correct. Furthermore, determining the type of epilepsy and other neurological conditions, if any, would allow the physician to create a better treatment plan for the patient. 

Because every patient has unique circumstances (such as age, medical history, tolerance of side effects, varying EEG results), there are different types of treatment options available.

Antiepileptic medications are the most common treatment. Although it does not cure epilepsy, the medications are effective in preventing seizures for most people when they are taken regularly.  There are many antiepileptic drugs available and the doctor may choose to prescribe one or more drugs depending on the patient’s circumstances and health. After starting the medications, the doctor will monitor the effects. Accordingly, he may adjust the dosage and may even prescribe other drugs. If the drugs are not effective in preventing seizures for the patient, the patient can consult with the doctor about other treatment options.

Alternatively, surgery is also an option. However, surgery for epilepsy is usually complicated because it involves many steps. A person should consider surgery only if he or she has a history of seizures with no success from standard medications. It helps if the individual has a seizure focus that causes it to always arise from one part of the brain, and if removal of the region would not damage important functions such as eyesight, memory, and speech.

Vagus nerve stimulation is also a possible treatment.  A battery that is about the size of a silver dollar is surgically implanted under the patent’s skin in the chest area (in most cases). With this battery, electrical energy can be used to stimulate the vagus nerve, a large nerve in the neck, to prevent seizures.

For children with epilepsy, a doctor might prescribe a ketogenic diet which is high in fat and low in carbohydrates. Although adults can go through a ketogenic diet as well, it is usually targeted at the children. The reasons behind ketognic diet’s success are still not clear today. About 80 percent of this diet is composed of fat. It mimics starvation by forcing the body to burn fat for energy. Usually, the doctor will ask the child to try the diet for 1-3 months to see if the ketogenic diet can successfully control seizures.  If it proves effective, the doctor will slowly decrease the antiepileptic dosages and ultimately stop the medications. The ketogenic diet treatment usually lasts about 2 years. When considering this alternative, it is important to consider the potential side effects as well, such as high levels of fat build-up in the blood. A medical team should closely monitor the health of patients undergoing a ketogenic diet.

 

References:

1.     Treatment. Epilepsy Foundation. Web. Retrieved February 13, 2014, <http://www.epilepsyfoundation.org/aboutepilepsy/treatment/index.cfm>

2.     Epilepsy. Centers for Disease Control and Prevention (2013). Web. Retrieved February 13, 2014, from <http://www.cdc.gov/epilepsy/basics/faqs.htm#7>

Relationships and Epilepsy

Naila Kabiraj

By: Stephanie Tuminello

With Valentine’s Day just passed it seemed as though all the world was full of reds and pinks and candy hearts. All this emphasis on love and relationships can be hard enough to deal with as is, but becomes significantly more difficult for those suffering from conditions like epilepsy and the stigma associated with it.

The history of epilepsy in terms of love, sex and marriage in the United States is both shocking and appalling. Up until as late as 1980 there were states which prohibited people with epilepsy from marrying. Worse still, until 1958 there were 18 states that legally allowed for eugenic sterilization of people with epilepsy.

Nowadays, things are better but can still be challenging. This is mostly due to misconceptions and misinformation. Despite overwhelming belief to the contrary, people with epilepsy can enjoy normal relationships and have normal sex lives.There has yet to be any concrete evidence that epileptic episodes are triggered by sex. Even though there is some statistical evidence that impotence and lower libido are more common in epilepsy patients, this is still not the majority of cases.

Men with epilepsy are just as likely as other men to have healthy children. Most epileptic women can have healthy offspring as well, though some antiepileptic drugs have been associated with birth defects. Still, though fertility is decreased in some epileptic men and women, this does not mean that children are not possible, and in fact many with epilepsy go on to have healthy, happy families.In the end, people with epilepsy are just as entitled to love and happiness as anyone else, and stigma alone seems to prevent this. If you find yourself in such a relationship, either as the person with the condition or the partner, the best course of action is an open, honest discussion. Because real, intimate love is patient, selfless, and never judgmental.

References

http://www.epilepsy.com/epilepsy/social_romantic

http://www.who.int/inf-fs/en/fact166.html

Reaching the Heart of India

Priyal Sakhuja

By: Priyal Sakhuja

The great Mahatma Gandhi once said, “The true India is not to be found in its few cities, but in its seven hundred thousand villages. If the villages perish, India will perish too.” Sadly, if Gandhi were to see the current health care scenario in rural India right now, he would not be too pleased. And neither are the seventy percent of India’s population who reside in these rural areas.

Unsurprisingly, the prevalence of epilepsy in these rural areas is higher than that in urban areas due to the lack of resources and under-treatment in the villages of India. However, the underlying issues don’t revolve around the lack of accessible health care. Instead, the integral issues lie within the cultural restrictions that add a burden to already burdened villagers who must deal with the health as well as the social issues associated with epilepsy.

In some rural areas of India, people with epilepsy are thought to have “demons” within them.  Attempts are made to exorcise these evil spirits by tying them to trees, beating them to release the spirits, cutting parts of their hair, or even starving them. One cannot help but stop and ask- Why is there still such a lack of knowledge in areas that need it the most? Why are people who are already struggling faced with even more struggles by the stigma of society? Why isn’t anything being done to change this situation?

Although much change is still needed in these areas, there is hope coming into the villages of India and that is “Hope on Wheels,” which is a mobile health care center that provides diagnosis, treatment, and most importantly, education about epilepsy in rural India. The pilot project focuses on rural Rajasthan, which will introduce a mobile health clinic vehicle equipped with diagnostic and treatment tools. The team of “Hope on Wheels’ includes clinical and technical experts as well as social workers who will collaborate with top city-based neurologists through a video conferencing facility.

Additionally, “Hope on Wheels” will provide patient, family, and community support through social work visits and follow-up consultations to regulate the treatment and identify any adverse effects. This program is moving one step towards altering the perception of epilepsy in rural India through the use of education and social workers. With continuous support and effort, “Hope on Wheels” hopes to reach more than 50, 000 patients and caregivers in Rajasthan.

Gandhi’s words resonate even today. Let’s not forget that the heart of India lies in its villages, and more importantly in its people. “Hope on Wheels” is just one step closer towards reaching the roots of India but it doesn’t end here. 

References: 

Dutta, Nirmalya. “What ails India’s Healthcare System?” The Health Site. August 18, 2012. Online. <http://health.india.com/diseases-conditions/what-ails-indias-healthcare-system>

Rizvi, Safia. “Epilepsy Care Rolls Into Rural India.” UCB. October 7, 2015. Online. <http://www.ucb.com/magazine/article/Epilepsy-care-rolls-into-rural-India>

 

The Keto Diet: Fat is the Cure

Koeun Choi

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Welcome to the Keto Diet. Breakfast, lunch, and dinner consist of mainly fats in a 3:1 ratio of fats to carbohydrates and protein but can be increased to 4:1 or even 5:1 for younger children. That sounds unhealthily delicious doesn’t it? To be able to eat bacon for almost every meal of the day?

This obviously raises some health concerns for parents who are new to this idea. Not only does it mean that your options for food is severely limited, but your child’s diet is reduced down to foods with a high fat content. Not only that, every meal has to be carefully calculated and weighed out down to the last gram. Many families have to go to great lengths to plan out their child’s meals and can never say,” let’s just order some pizza” at the end of a long day. Snacks have to be packed for sleepovers, your child can never partake in some of the birthday cake, and restaurant outings are an almost nonexistent possibility. So, why would you saturate your child’s diet with fats and place such restrictions on his or her life?

Well for one thing, these diets are usually implemented for severe cases, where medications do little to limit the amount of strokes. As a University College London study noted, 38% of patients had reduced frequency of strokes by more than 50% and 7% had the seizure frequency reduced by more than 90%. When there are some children out there who suffer up to 100 seizures per day, this can greatly increase a child’s quality of living. It’s crazy how fat can sometimes be beneficial.

Nutrition Issues in Gastroenterology. Series 39. June 2006. “The Ketogenic and Atkins Diets: Recipes for Seizure Control.” Retrieved November 11, 2013. http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/TurnerArticle.pdf

New York Times. November 17, 2010. “Epilepsy’s Big Fat Miracle.” Retrieved November 10, 2013. http://www.nytimes.com/2010/11/21/magazine/21Epilepsy-t.html?pagewanted=all

Steps towards Explaining Epilpesy

Krupali Chokshi

            BOOM! POW! Nowadays when we read about superheroes, they are beating up the bad guys – the robbers, the criminals, and the evil scientists.  These superheroes have amazing abilities, that range from super speed, to flying, to incredible strength. Children from around the world admire them, and aspire to be just as benevolent and amazing.

            Keeping this in mind, Eisai, a leading organization in the epilepsy community, was proud to announce its new comic book designed to educate children about epilepsy. The comic book tells the story of Jack, a 14 year old child with epilepsy who is trying to get through middle school while living his condition. He’s accompanied by a team of five superheroes who are trying to explain epilepsy to both Jack and his peers.

            The book’s content addresses the diagnosis and treatment of the disease and focuses on the stigma that children with epilepsy must face by spreading awareness and educating. The authors for the book recognize that the lack of awareness of such a prevalent disease is unacceptable and that it is essential to educate the public about the condition.

It’s reported that 36% of students with epilepsy try to keep their condition a secret to avoid discrimination and 23% of parents try to keep the secret to protect their children. The book tries to break down the tough medical concepts so children can really understand the disease and be able to educate their family, friends and peers about it.

Eisai has taken the first step towards educating and eliminating the stigma associated with epilepsy in a creative and fun way, and it’s important we continue to take these steps to prevent discrimination and aim for a happier and more aware society.

Here’s how you can order your book! http://www.eisaiepilepsy.com/

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The Stem of the Stigma

Krupali Chokshi

We’ve talked a lot about the stigma of epilepsy in all parts of our life: in school, at work, at home, and in general. We’ve mentioned why these stigmas are wrong, and how we can change them. But where did these stigmas come from? Where did they originate? Research has shown that epilepsy has been feared, and stigmatized for years, in many different parts of the world. Every culture had their own explanation, and their own beliefs on what it was, and how to get rid of it. Although there are slight variations, most lie along the same lines, and the misunderstandings have a lot of common ground. Here are some flashbacks of the stigma:

                The Hammurabi code, dating back to 1750 B.C. once said that a person with epilepsy could not marry or testify in court. They believed that they were not good enough to reproduce, or even be slaves. In fact, the Hammurabi code stated that if a slave was sold, and then found to have epilepsy, he could be returned.

                The myth that epilepsy is contagious is still prevalent today. It started in the early Christian church, clergy and synods segregated the “possessed” from the “faithful”. Christians were afraid that people with epilepsy would taint holy objects with their “evil” breath and their “unclean and deaf spirit”! Up until the 18th century, epilepsy was still believed to be contagious. A professor from the 18th century once wrote: “Therefore, neither talk nor bathe with him, since by their mere breath they infect people”

                In the late 19th century, it was commonly believed that people with epilepsy were frequently violent, anxious, and were prone to terrible hallucinations. They believed this was also related to religious ecstasy.  In fact, the Arab-Persian manuscripts in 600 A.C. also referred to epilepsy as a disease caused by demons. It's these beliefs that cause the fear, the misunderstandings, the rejection and the stigmatism.

                Although we have made progress in terms of understanding epilepsy and educating ourselves and others, the stigma still exists. While “demons” may not be the center of the stigma today, people with epilepsy still face discrimination in school, at work, and in their social life. It’s important to continue to educate and advocate for people with epilepsy so that they too may live healthy and happy lives.  

References

"EpilepsiaVolume 44, Issue Supplement s6, Article first published online: 18 AUG 2003." The History and Stigma of Epilepsy. N.p., n.d. Web. 21 Nov. 2013. <http://onlinelibrary.wiley.com/doi/10.1046/j.1528-1157.44.s.6.2.x/pdf>.

"Epilepsy Stigma." ibe-epilepsy.org. N.p., n.d. Web. 21 Jan. 2013. <http://www.ibe-epilepsy.org/wp-content/uploads/2013/07/1-Burden-Stigma-of-Epilepsy-Hanneke-de-Boer.pdf>.

 

 

Suspect 6: Tonic-Clonic. (A.K.A. the grand mal)

Neha Kinariwalla

By: Neha Kinariwalla

Before cueing any James Bond music, let’s take a look at the grand mal (equally big and bad)!

Because we often tend to unfairly stigmatize epilepsy it’s worthwhile to explain what the grand mal seizure actually is, as well as the physiology behind it. Let’s start by defining what the term literally means. The grand mal seizure consists of the following two phases; the first being tonic, and the last being clonic.

During the tonic phase, since breathing decreases, a person's lips, nail beds, and face can turn blue—this usually lasts for a minute or so.

During the clonic phase, there are jerking movements that usually alternate.

Tonic: Commonly thought of as some form of medicine taken to bring feel good, in physiological terms it means “muscular contraction” [2]. When a person has a tonic seizure, their muscles stiffen, their eyes roll to the back of their head, and they lose consciousness. This could be rapidly occurring at first, but will subside gradually. People often think that a person having such a seizure will “swallow their tongue”. Thankfully, that's physically impossible! Though one should never, under any circumstances attempt to open their tightly clenched jaw as that can be tremendously harmful to the patient experiencing the seizure.

Clonic: I can’t say clonic is commonly used in day-to-day language, but in medical terms it is just simple alternation of contraction and relaxation [2]. So naturally, a clonic seizure is when the individual’s muscles begin to spasm and jerk. Towards the end of this phase, one should look for a deep sigh after which normal breathing will resume.

It’s rare for these two types of seizures to be separate from one another. And when both are experienced at the same time, it’s known as the tonic-clonic seizure. Makes sense, right?

So what should you do? Prevent injury by placing something soft under their head. Loosen tight clothing. Turn a person on their side. Stay with that person and be there for them—physically and emotionally. If lasts longer than 5 minutes, call the doctor.

References:

[1] “Tonic and Clonic Seizures” Johns Hopkins Medicine. Web. 30 Oct. 2013.

[2] Tonic Clonic Seizures. Epilepsy Foundation. Web. 30 Oct 2013.

[3]  www.dictionary.com

 Reviewed by Dr. Miller-Horn 

Culture Clash: Hmong the Americans

Koeun Choi

 

The United States is a country built on the strength of immigrants from every corner of the world. This melting pot also drew in one Hmong family who were escaping the clutches communist soldiers of Laos. Nao Kao and Foua Lee lived among the Americans, trying to adapt to this culture that so greatly differed from their own set of beliefs and customs. Their first child to be born in America was Lia Lee, who had her first seizure at the age of 3 months.  

The Hmong name of epilepsy is qaug dab peg, which translates to "the spirit catches you and you fall down*" illuminates the Hmong belief that those who are epileptic are gifted with the ability to enter the spirit realm. Amongst the Hmong, the epileptic become shamans, helping those in need of physical and emotional aid. The American standards of treating the ill falls out of place, replaced by the herbs, chants, and other more spiritual acts for healing. Can you see the trouble brewing yet? 

The doctors who cared for her tried to give her medications and invasive procedures such as spinal taps and transfusions that her parents did not understand. Her parents looked to shamans, herbs, and special amulets to help, which the doctors did not understand. The cultural ignorance on both sides caused much conflict - so much so that at one point, Lia was taken out of her loving family to foster care because of what the doctors saw as negligence on her parents' part. In the end, Lia suffered a grand mal seizure that left her in a coma, which she never woke up from.  

The problem reduced down to the lack of communication between the Hmong and the American doctors and shed light on the problem of cultural barriers that need to be torn down in the world of health care. But, this also shows the varying views different people can have on epilepsy that is affected by their cultural heritages. Unfortunately, the misunderstandings between Lia’s family and her doctors brought upon a situation for her that maybe could have had a different future. Among the Americans, the lack of cooperatively and education on what epilepsy means to the two parties ultimately ended with no winners.

Los Angeles Times. September 20, 2012. "Lia Lee dies at 30; figure in cultural dispute over epilepsy treatment." Retrieved October 15, 2013 from http://articles.latimes.com/2012/sep/20/local/la-me-lia-lee-20120920. 

Los Angeles Times. September 18, 1997. "The Soul Catcher." Retrieved October 16, 2013 from http://articles.latimes.com/1997/sep/18/news/ls-33374/2. 

New York Times. September 14, 2012. "Lia Lee Dies; Life Went On Around Her, Redefining Care." Retrieved October 15, 2013 from http://www.nytimes.com/2012/09/15/us/life-went-on-around-her-redefining-care-by-bridging-a-divide.html?_r=0. 

US vs. the World

Koeun Choi

Let's take a step back for a second from us here in the United States, and compare how the rest of the world feels about epilepsy. How well do you think we stand in comparison to other countries in terms of the stigma that face people with epilepsy? 

It's sad to say that social stigma is common for epilepsy in many regions of the world. In countries such as Cameroon, Liberia, and Nepal, it is a common belief that dark forces lie behind the cause of seizures. Either there are signs of demonic possessions in people who are "weak", or it is the side effect of messing around with sorcery. In Uganda, as well as many other countries, people with epilepsy are not allowed to eat from the communal food pot for fear of transmitting the condition through saliva. Marriages can be nulled, in China and India, if one spouse was found to be epileptic, and in just 1996, in the Netherlands, a person was whipped and placed in isolation because people believed her seizures were due to magic. Absolutely ridiculous, wouldn't you say? 

How does the United States measure up? Social stigma is still prevalent in many aspects of the American life. In general, there is a reluctance for people to open up about their condition for fear of embarrassment and being treated differently. If we look at our history, there was a time when many states even prohibited people with epilepsy from marrying. The last state to remove this law did so only in 1980! (In the UK they repealed a similar prohibitive marriage law in 1970) In addition, up until 1970, many restaurants, theaters, and public places were legally allowed to deny people with epilepsy. Crazier still, our country's history shows 18 states that provided eugenic sterilization of people with epilepsy until the '60s. Back then, it was considered normal for the state to go through with compulsory (forced) sterilization for criminals, the mentally ill, and minority groups.* 

People with epilepsy all around the world face economic problems as well. In countries such as India, Nepal, and many others, people with epilepsy are given fewer roles and are viewed almost as burdens by their families. As a result, epileptic people tend to underrate themselves and throw away their potentials.  In China, 31% of people believe that people with epilepsy shouldn't hold jobs.  In Germany, Italy, and the United States, statistics show that of the people with epilepsy of working age, only 40-60% are able to find jobs, usually in positions below their potential, 15-20% are unemployed, and 20% retire early. According to the World Health Organization, it is difficult because epilepsy tends to "affect people when they are young at ages when they are most productive, often leading to unavoidable unemployment." 

And so, although some people may believe that the superstitions and stigmatism of other countries seem ludicrous and outlandish...if you take a closer look, you may realize that we may all be in the same boat. However, it is in hopes that by shedding light on the discrimination that epileptic people have faced to drive us to push towards greater movements against the stigma. Educate yourselves and spread the word. 

*In case you were interested, the sterilization of minority groups continued well into the 70s, with California being the lead state by more than double the statistics. Even just recently from 2006-2010 it was discovered that California Institution for Women in Corona had 148 women sterilized by being pressured or not given the proper information - all procedures violating the legal protection these women had (http://cironline.org/reports/female-inmates-sterilized-california-prisons-without-approval-4917). Absolutely disgusting. 

World Health Organization. February 2001. "Epilepsy: Social Consequences and Economical Aspects." Retrieved Oct 12, 2013 from https://apps.who.int/inf-fs/en/fact166.html. 

University of Vermont. April 2009. "Eugenics: Compulsory Sterilization in 50 American States." Retrieved Oct 12, 2013 from http://www.uvm.edu/~lkaelber/eugenics/.

#Stigmatized

Krupali Chokshi

How many of you own a Twitter? How many of you tweet, and “hashtag”? Lots of you, I bet. These phrases are all related to Twitter, an online social networking site that allows users to send and read text-based posts known as “tweets”. It’s gained massive popularity, and has nearly 400 million users. More than 200 million tweets and 1.6 billion search queries are generated every day. Today, it is one of the top 10 most visited sites.

Sure, twitter has its pros. It connects friends, family, and colleagues. It spreads information and ideas, and brings people together, whether it be for laughs, support, or common interest. It’s also been essential in revolutions, such as the 2011 Egyptian revolution, the 2000-2010 Iranian election protest, and the 2010-2011 Tunisian protest. It has the power to cause change, and influence the way people think. So what’s the problem?

                Twitter is also responsible for spreading stigmatizing remarks about epilepsy and seizures, leading to increased discrimination against people with epilepsy. A study was done analyzing almost 11,000 tweets mentioning the word “seizure”. They varied, from metaphors to personal accounts to informative tweets. The study found that 41% of the seizure related tweets were derogatory in nature and made fun of the condition. While there were a few tweets that spoke out against these derogatory remarks, researchers argue that it’s not enough, and we must take steps to educate the public about epilepsy to avoid these misconceptions.

                While Twitter could be used as a positive social media medium, it’s being used to encourage stigma and ridicule the negative aspects of the condition. It is comments like these that cause increased self-efficacy issues in people with epilepsy and an overall misunderstanding of the condition. It’s time to bring about a new wave of change to eliminate the stigma associated with epilepsy.

#Educate

 

References

" Epilepsy in the Twitter era: A need to re-tweet the way we think about seizures ." ScienceDirect.com | Search through over 11 million science, health, medical journal full text articles and books.. N.p., n.d. Web. 14 Oct. 2013. <http://www.sciencedirect.com/science/article/

" It's time for an epilepsy Twitter revolution ." ScienceDirect.com | Search through over 11 million science, health, medical journal full text articles and books.. N.p., n.d. Web. 14 Oct. 2013. <http://www.sciencedirect.com/science/art

A wearable seizure detection and notification system

Neha Kinariwalla

A convulsive seizure can be devastating not only to the patient but to the people around them. Ricky Housley gives an amazing TED talk, on his mission to change this. 

Rick Housley is currently a first-year engineering student at Stevens Institute of Technology. He graduated from Boston University Academy in May of 2012. At the age of 18, he signed an assignment agreement with a medical device company for IP and technology to develop and detect convulsive seizures.

The Epileptic Employee

Krupali Chokshi

Confucius once said “Choose a job you love and you’ll never have to work a day in your life”.  Working and finding a career to be passionate about is difficult, and requires years of searching, training and perseverance.  It requires overcoming obstacles, endless hard work and, of course, the perfect opportunity.  For most, the idea of finding the perfect career or job is hard, but with proper guidance and diligence, it is feasible. However, for people with epilepsy, finding and maintaining a career becomes infinitely more difficult because of unfair social stigma.

People with epilepsy face many obstacles that greatly limit their achievements at work. Many employers feel that people with epilepsy are not productive workers, and cannot be placed in situations of responsibility or stress. They feel that the seizures are “fearful” and often coworkers of people with epilepsy worry about “unpredictable events”’ when giving first aid to someone undergoing seizures. Those affected by the condition often report facing an unpleasant atmosphere at work. Additionally, while employees with epilepsy do not have poor attendance records or high accidents in the workplace, they are often found to have lower salaries than their respective colleagues.

It is important to realize that epilepsy is a “spectrum disorder”, and so those affected by the condition have a wide range of causes, seizures types, and severity levels. While it is true that some affected by epilepsy have severe seizures and cannot work, many others, with other levels of the condition, can be successful in a wide variety of challenging careers. Despite the variance, research shows that only 40-60% of people affected by epilepsy are employed in Germany, Italy and the United States.  In response to this, those with epilepsy try to hide their disabilities in the workplace. In the United States today, approximately 3 million Americans with epilepsy keep it a secret because they fear being treated differently.

            It is important to recognize discrimination in the workplace against people with epilepsy. This discrimination increases the self-efficacy issues that people with epilepsy may already face, and significantly reduces their quality of life. Organizations such as the Epilepsy foundation and laws such as the Americans with Disabilities Act aim to prohibit disability based discrimination, but it is important to educate the public and raise awareness to truly eliminate the stigma.

References

  • BenderPresident,      Joyce, and CEO of Bender Consulting Services.. "The Stigma with      Hidden Disabilities." Bender Consulting Services | Finding      employment for people with disabilities. N.p., n.d. Web. 8 Oct. 2013.      <http://www.benderconsult.com/articles/stigma-hidden-disabilities>.
  • "Employment      Topics." Epilepsy Foundation. N.p., n.d. Web. 8 Oct.      2013.      <http://www.epilepsyfoundation.org/livingwithepilepsy/employmenttopics/index.cfm>.
  • "Stigma      of epilepsy. [Can J Neurol Sci. 2008] - PubMed - NCBI." National      Center for Biotechnology Information. N.p., n.d. Web. 8 Oct. 2013.      <http://www.ncbi.nlm.nih.gov/pubmed/18973059>.
  • "Zonegran." Welcome      to the Changing Faces of Epilepsy Web site. N.p., n.d. Web. 8 Oct.      2013. <http://www.changingfacesofepilepsy.com

 

Classroom Struggles

Koeun Choi

By Koeun Choi

School is pretty darn difficult. The endless stream of tests and assignments can be overwhelming to the average student. Students who deal with epilepsy also have additional hurdles to overcome in the academic environment. Because epilepsy is a spectrum disorder, there are varying degrees with which it can deter - not just academically but also socially - a child's experience at school.  

Now, there are generally 2 types of seizures a person can have. An absence seizure is when a person "blanks out." It is often mistaken for inattentiveness, which sucks because most people who experience it, are not even aware that the seizure occurred. The second type involves convulsions and is the more widely recognized, but often misconstrued version of seizures a person can experience. (When somebody is convulsing, a widely misconceived notion is that you need to put something in their mouth to clamp down on, or hold restrain their bodies down - not necessary. Just place something soft underneath their head so they don't hurt themselves, and let the process end on its own.) After experiencing seizures, some may be energetically drained and may require recovery time. When something like this happens in class, it obviously takes time away from the student's time to learn. Not only that, seizures can occur during the night affecting how much sleep a student gets, making it difficult to focus the next day. Seizures in general disrupts brain activity and may affect cognitive learning and memory capabilities. Antiepileptic drugs can also present side effects deterring brain function by causing drowsiness and inhibiting concentration/memory.  

Additional support should be provided for the student. However, a gray area looms over questions such as how should the teaching curricula should be set and adapted towards the child - if a student's learning is significantly slowed down, should he or she be separated into special educations class? What if a school is short staffed for such classes? What if they refuse to modify school policies on grades and tests for a child? What if the child becomes too much of a liability to be allowed to participate in a school trip or activity? 

As you can see, not only are there the physical problems when dealing with epilepsy, many children can begin to suffer socially because of epilepsy. With some of the questions brought up above, parents can look towards their children's legal rights as dictated by the Individuals with Disabilities Educations Act (IDEA), a federal law that entitles all epileptic children to free and appropriate education in the most "normal" setting possible. 

The embarrassment and the social stigma a person feels can develop at a very early age in school if the seizure episode isn't handled properly. As such, it is important for educators everywhere to be mindful of what to do to accommodate the student's learning. If convulsing occurs during class, it could potentially embarrass the child and frighten his or her classmates. It becomes a crucial moment to take action and be able to explain what had just occurred - "What is a seizure? Are they mentally ill? Is it contagious?"  are all questions that if not answered properly or even just overlooked can lead to further misconceptions and worsen the stigma. It is important to stress that people with epilepsy are no different than you or I and the best thing to do when a student convulses is to keep him/her safe and be a friend when it is over. 

Ultimately, the best way to fight the stigma against epilepsy starts right here with education 

Resorces 

Epilepsy Foundation. 2005. "Elementary and Secondary Education and Federal Law." Retrieved October 3, 2013, from http://www.epilepsyfoundation.org/resources/epilepsy/upload/7-StudentsK-12.pdf. 

Epilepsy Foundation. 2013. "Helping Children Understand." Retrieved October 3, 2013, from http://www.epilepsyfoundation.org/livingwithepilepsy/educators/socialissues/helping-children-understand.cfm 

Epilepsy Foundation. 2013. "Your Child at School and Child Care." Retrieved October 3, 2013, from http://www.epilepsyfoundation.org/livingwithepilepsy/parentsandcaregivers/parents/your-child-at-school.cfm. 

Epilepsy Society. 2013. "School, Education, and Epilepsy." Retrieved October 3, 2013, from http://www.epilepsysociety.org.uk/school-education-and-epilepsy#.UkzzkIZQEiU.

 

The Myth Busters: The Epilepsy Enigma

Krupali Chokshi

By Krupali Chokshi

There are various myths surrounding Epilepsy that make it a “fearful” and puzzling condition. It is these false ideas that lead to the misunderstandings associated with the condition. For example, in the 19th century, people with severe epilepsy were kept isolated because people though seizures were contagious! Furthermore, some states had laws forbidding people with the condition to marry or become parents. It’s thus important to bust these myths and understand the truth behind epilepsy! Here are a few common misconceptions available from the official site for Epilepsy in Canada:

Myth: You should put something in the mouth of someone having a seizure.

Fact: You should not put something in the mouth of someone having a seizure; you should simply roll them on their side and put something soft under their head to protect them from injuring themselves! In fact, you should not restrain the seizure in any way, it will run its course and you cannot stop it.

Myth: Only kids get epilepsy.

Fact: Epilepsy affects a wide range of people, of all different ages. In the elderly, seizures from epilepsy often occur with other health problems like stroke or health disease.

Myth: People with epilepsy are disabled and can’t work.

Fact: Epilepsy is a “spectrum disorder” which means the causes, seizure types and severity levels can vary greatly from person to person. While some may have severe seizures and cannot work, others can be successful in challenging careers. In fact, people with epilepsy are found in a wide range of careers and often keep their condition hidden because of the stigma associated with it.

Myth: Epilepsy is not a common disorder.

Fact: Epilepsy is a very prevalent disorder that affects 2.3 million Americans and about 65 million people worldwide. About 150,000 people in the United States are diagnosed with the condition every year. Additionally 1 in 3 Americans knows someone who has epilepsy.

Myth: People with epilepsy are violent and seizures are something to be feared and maybe harmful.

Fact: People with epilepsy are not violent or generally more aggressive than most people. Seizures are unlikely to cause harm to anyone else and are not to be feared! It is important to give the correct first aid when needed. Generally, people affected by epilepsy do the same thing during each episode.

Myth: Epilepsy is a life-long disorder.

Fact: Thankfully, people with epilepsy have seizures and require medication for only a small part of their lives. Most people who have seizures have epilepsy that can be easily controlled. Only 25% may develop difficult to control seizures that may last a lifetime. Most childhood forms of epilepsy are outgrown by adulthood.

References

  • Devinsky,      Orrin. "Facts and Myths about Epilepsy." epilepsy.com.      N.p., 8 Nov. 2013. Web. 29 Sept. 2013.      <https://www.epilepsy.com/101/ep101_facts>.

  • Fletcher,      Sally. "Facts and Myths About Epilepsy." Epilepsy      Health: Alternative & Complementary Treatments & Therapy for      Epileptic Seizures. N.p., n.d. Web. 30 Sept. 2013.      <http://www.epilepsyhealth.com/fact-myth.html>.

  • "Misinformation      & Myths." The Epilepsy Foundation of Greater Los Angeles.      N.p., n.d. Web. 30 Sept. 2013.      <http://www.end-epilepsy.org/api/Index.cfm/cms.page/i/4230/Misinformation-&-Myths>.

 

Got Treatment?

Koeun Choi

 

By Koeun Choi

For many, epilepsy can be a very manageable disease. Treatments for epilepsy can range from surgery, specialized diets, medical devices, and/or a cocktail of drugs. The right course of treatment is directed by the doctor and requires a multitude of tests and trials beforehand. Unfortunately, all these different pathways come with sometimes even more serious consequences and side effects. In addition, 10% of the population of people who suffer from epilepsy receive no benefits from the current available treatments. Tackling epilepsy can be challenging, and it requires true dedication and commitment from families to overcome it 

First, doctors usually look towards prescribing anti-epileptic medication. About 70% of the epileptic population relies on the prescriptions, but it is not a cure. They must take their medication at least once a day. Some of the common ones like Tegretol, which is used for mixed seizures, have common side effects like fatigue, nausea and dizzieness. But others like Depakote, Valium, and Fycompa can cause problems with memory, cognitive and language delays for children, and behavioral changes. For some children, it makes learning difficult; and especially if they experience seizures in class, it can make having epilepsy a socially depressing disease. Usually, it is from the embarrassment that the kids have trouble with in class more so than anything else. Stigmatism in the classroom is a main issue that children face with epilepsy 

Surgery would require studying the patient's brain and focusing on the specific area that causes the seizures to start and actually removing the problem causing area. A less severe method, or for cases where the area triggering the seizures are too large, there is the implantation of a vagal nerve stimulator. This acts almost like an electrical pacemaker, placed by a large nerve in the neck where short bursts of electric energy are directed into the brain. Unfortunately, these methods don't always work. About the 30% of the patients who cannot rely on the medication or side effects looks toward these options. 

Epileptic people are  also known to go on the ketogenic diet, which essentially is like the Atkins Diet for bamfs. It consists of almost all fat and no carbs, which could make eating out very difficult. How it works, for those of you who are interested, is that as the body receives less and less glucose in the person's everyday diet. When the body runs out of carbohydrates, which it definitely will because of the such low quantity consumed, it will continuously rely on burning fat which almost mimics starvation. How this helps derail seizures is not yet understood, but it's pretty cool. This however, needs to be heavily controlled, down to the last calorie, with the proper consultation of doctors and nutritionists 

It truly is difficult to imagine how heavily some families can be affected by epilepsy, especially when they cannot rely on the available treatments, or if the treatments bring about harsh side effects. But it is important to recognize the strength it takes to live with epilepsy, and be able to admire those who stand by them.  

References 

Center for Disease Control2013. "Frequently Asked Questions." Retrieved September 21, 2013, from http://www.cdc.gov/epilepsy/basics/faqs.htm#6. 

New York Times. Feb 20, 2007. Aliyah Baruchin. "Battling Epilepsy, and Its Stigma." Retrieved September 21,2013, from http://www.nytimes.com/2007/02/20/health/20epil.html?pagewanted=all. 

National Institute of Health. 2013. "Seizures and Epilepsy: Hope through Research." Retrieved September 21, 2013.