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Purple Day: a day for thinking about people with epilepsy

Purple Day started with the curiosity and of a girl in eastern Canada, in the province of Nova Scotia, who had epilepsy. It soon became a world-wide success. Purple Day is now an international initiative and effort dedicated to increasing awareness about epilepsy around the globe.

Why is it so important to create awareness around people with epilepsy? Up to 10% of the general population suffers from a single seizure at some point in their lives, and up to 1% tend to have repeated unprovoked seizures, which per definition, is called epilepsy. So we are looking at a frequent medical condition in the range of insulin-dependent diabetes. On an individual level, a seizure event, particularly one that is accompanied with a loss or impairment of consciousness, almost always results in a deep disturbance of inner balance, autonomy, and self-confidence. The fact that these seizures can occur any time and anywhere is extremely frightening for the affected human being. The “unexpected part” is the scary part, as most of the people with epilepsy feel otherwise entirely healthy and often live a totally normal life. Family, close friends, and members of the social and professional environment often feel shocked and helpless in the first confrontation of such an event. It is not too surprising that this disorder — mentioned already in the first readings of humankind almost 4,000 years ago — created for centuries and millennia a huge confusion and misconceptions in society with regard to underlying causes and ways of potential treatments. People with epilepsy subsequently have often become victims of stigmatization and prejudices, leading to social isolation and higher rates of unemployment and comorbidities, even up to the modern times of the 21st century.

An epileptic or sick person having a fit on a stretcher, two men try to restrain him. Ink drawing attributed J. Jouvenet.  CC BY 4.0 via Wellcome Library, London.
An epileptic or sick person having a fit on a stretcher, two men try to restrain him. Ink drawing attributed J. Jouvenet. CC BY 4.0 via Wellcome Library, London.

Here’s the good news. Over the last 150 years, our understanding of the underlying causes of seizures and epilepsy — the scientific basis — has grown enormously. Epilepsy could be identified by means of functional tests such as EEG and structural tests such as MRI as highly diverse brain diseases in which a critical interplay of acquired and genetic factors create an individual brain environment with increased “hyperexcitability,” resulting in all kinds of clinical types of seizures.

The other really good news is that individually tailored treatment strategies, including medication, nerve stimulation, or resections of epileptogenic brain tissue, can lead to long-lasting seizure freedom in up to 80% of all affected people.

Knowledge transfer and making the patient the expert of his or her medical condition is a key component in a successful treatment approach in epilepsy. This is as important as all the new scientific fascinating insights in diagnosis and therapy. Getting patients involved, helping them to understand the disease, providing them with all available information, addressing all thinkable questions, and encouraging disease leadership and responsibility will create a powerful, trustful, and respectful relationship between patient, physicians and care givers. This team approach will lead to awareness and carefulness from all sides regarding disease management and immediate action taking. Compliance – defined as a reliable interaction between physician in patients with regards of agreed medical advice, prescriptions, and treatment goals – will significantly increase and impact a favorable prognosis for both the medical and social condition.

Purple day is a wonderful, annual opportunity to challenge all of us and help us to think how we can improve the lives of people with seizures in concert of all new exciting tools and insights. It is growing time and awareness time for everybody.

Heading image: EEG recording cap By Chris Hope. CC BY 2.0 via Wikimedia Commons.

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