Raising Awareness For Epilepsy On World Purple Day
Ever since Dostoevsky’s Prince Mishkin and even before him epileptic seizures have been wildly misunderstood. Because of the number of strange sensations they come with and the physical reactions they induce, seizures cannot go unnoticed in societal settings and have been attached to a variety of interpretations throughout cultures – from demonic possessions and traces of witchcraft to signs of a prophetic gift, being in contact with divine powers, insanity or any combination of the above. The belief that epilepsy is contagious probably started as early as antiquity and continued throughout the Middle Ages when in Europe some Christian preachers separated the “possessed” from the faithful in order to keep them from desecrating the holy objects. Thus began a long history of isolation, fearful superstitions, lack of awareness and adequate treatment.
Sadly, even today epilepsy is misunderstood in different places of the world, no matter how common it actually is – one in every 26 people develops it in their lifetime[1]. This year, on March 26th we at FindMeCure urge you to wear purple to promote epilepsy awareness.
Why purple?
Purple Day falls on the 26th of March each year and it’s International Epilepsy Awareness Day, when people around the world wear purple in order to bring the attention to epilepsy. Purple and lavender are generally associated with epilepsy and some chose to simply wear a lavender ribbon for example – you don’t have to go all out to show support and solidarity. Purple Day was started in 2008 by Cassidy Megan who wants to raise awareness about the different types of seizures people have and how to respond and tend to someone having a seizure.
What are the obstacles people with epilepsy face?
Often, misinformation about what seizures are and how a seizure looks like from the outside can leave a person with epilepsy in a vulnerable state – they can get injured or feel scared and alone. While we at FindMeCure were talking and researching about epilepsy, what stuck with us was the feeling of isolation people express. A lot of them say that sometimes misunderstanding and inadequate reactions to their condition can be worse than the seizures themselves.
And although anyone can develop epilepsy at some point in their life, the condition often has a socio-economic aspect to it, with less privileged groups in society being more likely to a) develop epilepsy or b) not receive the optimal level of care. Epilepsy rates over the course of one’s lifetime, for example, are higher in blacks than in whites and Hispanics are more commonly affected than non-Hispanics. While the cause is unclear, it has been suggested that social status can be affecting the numbers and it might be behind the “treatment gap” – different racial backgrounds can signify different places of residence, which in turn can mean different health care plans and access to treatment.
Even when treatment is available and affordable however, an estimated quarter of epilepsy patients have uncontrolled seizures and although generally speaking the majority of people with epilepsy who undergo treatment report great improvements, including remission and even – after up to 10 years – going off medication. Half of them also report concerning side effects[2]. Some people don’t respond to medication used to control seizures after one year of taking it and even after they’ve tried at least two different kinds of drugs.
What kind of resources and research are out there?
More and more doctors get on board about “integrative medicine”. We’ve talked about it a lot here, on the FindMeCure blog, but what integrative medicine basically means is adding supplementary treatments (that don’t necessarily have the strict scientific research to back them up but can’t worsen the patients health either) to the existing drugs and therapies available for the condition. Practitioners of integrative medicine typically rely the most on conventional medicine but try to include other practices in their health care approach. In the case of epilepsy, such practices may include dietary supplements, acupuncture, meditation or other relaxation techniques, yoga, tai chi, massages and so on from the “wellness” category of any given spa studio.
The Epilepsy Foundation, however, emphasizes clinical research and the discovery of new, better drugs and therapies for the treatment of epilepsy through their project – The Epilepsy Therapy Project. The aim of the project is to bring new discoveries to epilepsy patients as soon as safely possible, so they not only advocate for but also sponsor clinical trials and post clinical trials. If you are interested in what the Epilepsy Foundation does, you can check out their website where they have listed the kind of funding they lend to new scientific research into epilepsy.
[1] https://www.epilepsy.com/learn/about-epilepsy-basics/who-gets-epilepsy
[2] https://www.epilepsy.com/learn/about-epilepsy-basics/will-i-always-have-seizures