Ending the stigma of epilepsy

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Epilepsy is one of the most common neurological diseases and can be treated

Johannesburg, 5 February, 2019 – Epilepsy, a chronic disorder of the brain, is one of the most common neurological diseases in the world, affecting over 50 million people. 

People of all ages suffer from epilepsy, with nearly 80% of them living in low- and middle-income countries. While effective treatment exists to control epilepsy, many people – particularly in low-income countries, do not seek treatment for fear of discrimination and stigmatization.

Ahead of International Epilepsy Day on 11 February, Novartis South Africa has called for greater awareness and an end to the stigma around epilepsy.

“According to the World Health Organization, in low- and middle-income countries, about three-fourths of people with epilepsy may not receive the treatment they need,” says Dr. Chris Nathaniel, Medical Head – Specialty Care at Novartis Southern Africa.

“This unfortunate ‘treatment gap’ exists despite the fact that inexpensive medication is available to control epileptic seizures. In fact, studies in both low- and middle-income countries have shown that up to 70% of children and adults with epilepsy can be successfully treated with anti-epileptic drugs (AEDs). Furthermore, after 2 to 5 years of successful treatment and being seizure-free, drugs can be withdrawn in about 70% of children and 60% of adults without subsequent relapse.” 1

However, there is low availability of AEDs in many countries. In addition, in many communities, fear, misunderstanding, discrimination, and social stigma still surrounded epilepsy for centuries, sometimes making people reluctant to seek treatment1.

“It’s time to end the stigma, which can impact on the quality of life for people with the disorder and their families,” says Dr Nathaniel.

Understanding epilepsy

Epilepsy is not contagious and is characterized by recurrent seizures, which are brief episodes of involuntary movement that may involve a part of the body or the entire body.2-8 The most common type of epilepsy, which affects 6 out of 10 people with the disorder, is called idiopathic epilepsy and has no identifiable cause.

Epilepsy with a known cause is called secondary epilepsy, or symptomatic epilepsy. The causes of secondary epilepsy could include brain damage, a severe head injury or brain malformations.1

Seizures can vary in frequency, from as little as one per year to several per day.1 These seizures can be highly distressing for both the person with epilepsy and for those witnessing them2-8. For many people with epilepsy, a seizure can be preceded by a sense of impending disaster or a sense of euphoria.

During a seizure, a person may lose consciousness, their muscles may relax and cause them to fall down unexpectedly, or they may jerk and move about uncontrollably and lose control over their bowels or bladder. A seizure can also cause what sounds like screaming, as a result of muscles tightening around the vocal cords.2-8

But not all seizures involve convulsions – even a brief lapse of attention, muscle jerks, rapid eye movements, blinking and staring could also be signs of a seizure. After a seizure, the person may feel dazed and confused and have trouble remembering what happened. They may also suffer from a headache, or feel unusually sleepy or fatigued.2-8

Epilepsy risks

An epileptic seizure can interrupt heart rhythm and in the long term, epilepsy increases the risk of heart disease and stroke. Most women with epilepsy have healthy pregnancies, but there are increased risks.2-8

People with seizures tend to have more physical problems (such as fractures and bruising from injuries related to seizures), as well as higher rates of psychological conditions, including anxiety and depression. Similarly, the risk of premature death in people with epilepsy is up to three times higher than the general population, with a large proportion of these deaths potentially preventable, such as falls, drowning, burns and prolonged seizures.1

According to the WHO, people with epilepsy can experience reduced access to health and life insurance, a withholding of the opportunity to obtain a driving license, and even barriers to enter particular occupations. 

End the stigma, and seek treatment

With effective, affordable treatment options available, people suffering from epilepsy need to seek diagnosis and treatment that may be able to control or avoid seizures, and minimize the other health impacts of epilepsy, says Novartis. Patient support groups are also a good way for epilepsy patients to gain emotional support from a community of people with the same disorder and learn about common challenges and how to overcome them. Support and information for both people suffering from epilepsy and their families is available through Epilepsy South Africa.

About Novartis

Novartis is reimagining medicine to improve and extend people’s lives. As a leading global medicines company, we use innovative science and digital technologies to create transformative treatments in areas of great medical need. In our quest to find new medicines, we consistently rank among the world’s top companies investing in research and development. Novartis products reach nearly 1 billion people globally and we are finding innovative ways to expand access to our latest treatments. About 125 000 people of more than 140 nationalities work at Novartis around the world. Find out more at www.novartis.com.

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  1. World Health Organization Epilepsy Fact Sheet https://www.who.int/news-room/fact-sheets/detail/epilepsy Accessed 15/01/2019
  2. http://thebarrow.org/Education_And_Resources/Barrow_Quarterly/204913 http://basicneeds-fellowship.blogspot.com/2014/11/the-effects-of-epilepsy-on-body.html Last Accessed 29/01/19
  3. Effects of Seizures on Autonomic and Cardiovascular Function -Orrin Devinsky, M.D. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC531654/ Last Accessed 29/01/19
  4. University of Rochester Medical Centre Health Encyclopedia: Epilepsy and Seizures https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=135&contentid=4 Last Accessed 29/09/19
  5. Johns Hopkins Medicine: Epilepsy and Seizures  http://hopkinsmedicine.org/healthlibrary/conditions/nervous_system_disorders/epilepsy_and_seizures_85,P00779/ Last Accessed 29/01/19
  6. Mayo Clinic: Epilepsy https://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/syc-20350093 Last Accessed 29/01/19
  7. Epilepsy Foundation Michingan: Impact on Wellness http://www.epilepsymichigan.org/page.php?id=361 Last Accessed 29/01/19
  8. Mayo Clinic: Grand Mal Seizure https://www.mayoclinic.org/diseases-conditions/grand-mal-seizure/symptoms-causes/syc-20363458 Last Accessed 29/01/19

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