Epilepsy, a way of living

An insight into Epilepsy is given in this brilliant article by Isabel Puig-Pey Comas. As a scientist she has the critical view on this topic but – being affected herself- she also transmits very personal insights into this disease. Thanks for this article Isa!

article by  Isabel Puig-Pey Comas

Epilepsy has afflicted human beings since the dawn of our species and has been recognized ever since the earliest medical writings. The Greek physician Hippocrates wrote the first book about epilepsy in 400 B.C., In fact, the word epilepsy is derived from the Ancient Greek ἐπιληψία (epilēpsía), which came from ἐπιλαμβάνειν (epilambánein) meaning “to take hold of” [1].

epilepsy.jpg Epilepsy, a way of living

source: Wikipedia

Recurrent seizures are the main characteristic of this chronic neurological disorder, which involves episodic abnormal electrical activity in the brain. Epilepsy does not discriminate among age, sex or country. Worldwide around 50 million people are epileptic, defined by at least two unprovoked seizures [2]. Over 40 different types of epilepsy have been described. Seizure characteristics, treatment and prognosis are unique for each type of epilepsy, leading to a complex classification. The majority of them are idiopathic, which stands for unknown origin.

In the past epilepsy was associated with religious experiences as well as with demonic possession. An epileptic seizure is even referenced in the Gospel according to Mark where it says: ` […] my son, who is possessed by a spirit that has robbed him of speech. Whenever it seizes him, it throws him to the ground. He foams at the mouth, gnashes his teeth and becomes rigid […] (Mark 9:14-29) [1]

Increasing knowledge related to epilepsia’s field contributed to decrease its stigma. However, at the end of the twentieth century, some U.S. states still had laws forbidding people with epilepsy to marry or become parents. Nowadays people suffering from seizures are included into the Americans with Disabilities Act [1].

Personal acceptance of the disease is essential for epileptic patients. However, comprehension of the community also plays an important role and highly contributes to their social integration.

Major goals in the treatment of patients with epilepsy are the control of harm or seizure-related accidents due to loss of consciousness, and to minimize acute and long-term antiepileptic drug side effects. On the other hand, sometimes health care professionals and people close to epileptic patients are not aware of the impact that this disease causes in the daily life. Everyday tasks or habits that ‘normal people´ enjoy are strictly forbidden or restricted for epileptic patients. This directly correlates with their quality of life (QOL). For example, they experience reduced access to health and life insurances, a withholding of the opportunity to obtain or use a driving license, and barriers to enter particular occupations. Moreover sleep deprivation increases frequency of seizures, and consumption of alcohol should be avoided or drank with moderation. The addition of these ‘small things’ influence self-esteem and patient life satisfaction.

In this article I want to focus on the psychological functioning of epilepsy affected individuals. I chose a publication to comment entitled Quality of life in seizure-free patients with epilepsy on monotherapy [3].

The study tried to elucidate demographic, clinical and socioeconomic factors influencing QOL of patients from different medical centers in Israel, being stable on monotheraphy and seizure-free for at least one year.

The 103 included patients responded to three different questionnaires. One of them was the Quality of Life in Epilepsy Inventory (QOLIE-31), a widely used instrument developed especially for the evaluation of QOL in patients with epilepsy. QOLIE-31 consists of 31 questions divided into seven domains: emotional well-being, social functioning, energy/fatigue, cognitive functioning, seizure worry, medication effects, and overall QOL. Each domain is scored by calculating the mean score of the responses to the questions within that domain. This questionnaire was developed in 1993, and there are several adapted versions to assess QOL of adolescents, ages 11 to 17 (QOLIE-AD-48), specific problems related to epilepsy (QOLIE-31-P), or severity of seizures (SSQ) [1].

After answering the questionnaire, physicians reported that the variable found to be most strongly associated with overall QOLIE-31 score was antiepileptic drug side effects involving the central nervous system.

The only other factor significantly associated with overall QOL was employment, including difficulties in finding and maintaining a regular job. In fact, employed patients scored higher for overall QOL and also for the cognitive domain compared to the unemployed.

As for gender, an increased seizure worry in women was the unique statistically significant difference described. Authors hypothesized that one possible explanation of this result might be the concern of fertile female patients with epilepsy to have an increased risk of miscarriage, congenital malformations, perinatal death, and frequency of seizures associated with pregnancy.

With regard to the family status, married patients scored significantly higher (meaning better QOL) for the emotional domain than single and divorced patients.

brain epilepsia Epilepsy, a way of livingThe authors of this article conclude that although decreasing seizure frequency and achieving seizure freedom are desirable objectives in the treatment of patients with epilepsy, clinical care should be attentive to other factors influencing QOL. The focus on antiepileptic drug side effects could therefore be the basis in the development of strategies to improve QOL of these patients [3].

I chose this topic and this article because it also concerns me. I am a pharmacist, I a am scientist, I am a woman and I am epileptic (under monotherapy and seizure controlled).

My debut occurred more than four years ago. Since then my life, and most important the conception of my life, changed drastically.

I can not speak about seizures, as I am not aware of what exactly happens when they take place. Instead, I can give my personal perception of this disease and the world surrounding epilepsy: chronic medication, side effects, lifestyle adaption and possibly the worst for me, feeling the inquietude and anxiety, of my family and friends.

I can say that my QOL has been mainly affected due to antiepileptic drugs side effects. I have been treated with two distinct drugs. First I was treated with valproic acid, for almost four years. During this period I noticed I gained weight, as I felt more hunger than before. I lost hair and my hands trembled, shaking involuntarily. Moreover I was less active and productive in different aspects of my life. My neurologist prescribed me levetiracetam when I was diagnosed polycystic ovary syndrome (PCOS), given that an increased prevalence of PCOS associated with valproic acid use has been reported [4]. Levetiracetam changed many things. In the first months I completely lost appetite. I could say that I recovered and maybe increased a restless and lively behaviour. Anyway, I am not able to distinguish if switching to levetiracetam was the unique reason. The most important fact is, that PCOS reversed after a year and my seizures and global feeling improved notably.

From a psychological point of view, it is complicated for me to manage a disease that I am not able to perceive completely, to live and understand the concept of excessive electrical discharges in a group of my brain cells. Apart from that, I sometimes have trouble to respect or follow some recommended boundaries, since my seizures are controlled thanks to medication.

I know that many people do not have the same opportunities as I have, being treated and supported. My disease perception has been progressing and now I think that I am lucky and I enjoy and like my life. Epilepsy made me stronger since it appeared and nowadays it is not conditioning my mind as much as it used to. However, I dream of not depending on medication anymore.

Looking forward in time I expect that scientific and clinical research will improve our knowledge related to epilepsy and brain disorders leading to an even better treatment.

I also expect me to grow old and to be able to look back and say that life was fantastic – despite of epilepsy.

References:

[1]  http://www.epilepsy.com/

[2] http://www.who.int/topics/epilepsy/en/

[3] Auriel E, Landov H, Blatt I, Theitler J, Gandelman-Marton R, Chistik V, et al. Quality of life in seizure-free patients with epilepsy on monotherapy. Epilepsy Behav. 2009 Jan;14(1):130-3.

[4] Bilo L, Meo R. Polycystic ovary syndrome in women using valproate: a review. Gynecol Endocrinol. 2008 Oct;24(10):562-70.

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