Games for Everyone

Underpinned by the core values of humanity, equality and destiny, the Commonwealth Games will take place in Birmingham on July 28 th 2022. This eleven-day event will see international athletes compete in a variety of sports and unite 72 teams, 54 Commonwealth of Nations countries and 18 territories.

Starting out in 1930 as the British Empire Games, the 2022 Commonwealth Games will be the first time the West Midlands has played host to the event. Taking place in 15 venues throughout the West Midlands region, preparation for the Games has sparked extensive regeneration schemes stimulating economic growth and thousands of job opportunities.

Birmingham’s location, community, infrastructure and its diverse and vibrant culture all combine to make it the perfect host for this, “Glorious Festival of Sport”.

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The number of independent countries that make up the Commonwealth in Africa, Asia, the Americas, Europe and the Pacific.
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The number of Commonwealth members out of the 42 small states around the world, with a population of 1.5 million or less.
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The number of citizens who live in Commonwealth countries, with more than 60 per cent of people aged 29 or under.
Commonwealth Games 2022 - Kasam Parkar, founder of The Voice For Epilepsy, is proud to be one of the inspirational Batonbearers.

Batonbearers at the Commonwealth Games 2022

As a part of tradition surrounding the Commonwealth Games, Her Majesty The Queen has placed a message inside the Baton which will be read out during the Opening Ceremony on July 28th. The Queen’s Baton spends between two and four days in each country and territory and will be carried across the country by inspirational Batonbearers, including the founder of The Voice For Epilepsy, Kasam Parkar.

Empowering people, celebrating community and contributing to charity, Kasam is a figure of inspiration, promoting epilepsy awareness, removing associated stigma and positively challenging epilepsy sufferers to achieve their best.

Carrying the Baton for a section of the route in this once-in-a-lifetime experience, Kasam was chosen to reflect the diversity in communities across the UK and for his unique and inspiring story.

© Commonwealth Sport
Video from official YouTube channel of the Commonwealth Games Federation

Epilepsy and Sports

It’s a common misconception that people with epilepsy shouldn’t participate in sports and exercise. This is mostly due to fear and ignorance surrounding the associated risks. Evidence and research suggest that sports and exercise contribute to better seizure control and improved mental, emotional and physical health.

Equally, certain medications can reduce the likelihood of occurring seizures. You should always follow clinical advice and consider possible triggers and safety factors before you choose to practice a sport that you enjoy.

Even if you don’t become a famous athlete with epilepsy, you can still take inspiration from elite athletes competing in the Commonwealth Games. These professionals have overcome social, emotional and physical challenges to compete at the highest and most prestigious levels.

A range of sports demonstrating the Commonwealth Games 2022
Flags representing the Commonwealth

The Commonwealth Health

The Commonwealth is spread over every continent. Synonymous with epilepsy, these countries encompass every faith, gender, social class, race, language and culture. Globally, an estimated 65 million people suffer from epilepsy, with five million new diagnosis each year.

As one of the most common neurological conditions in the world, the economic implications associated with epilepsy are huge. Moreover, the sufferer can experience poor emotional health, reduced quality of life, social isolation and discrimination.

For centuries, people have shared misperceptions and misinformation surrounding epilepsy, inviting prejudice and stigma. Indeed, some people are so ashamed of their condition that they’re reluctant to admit they suffer from it.

Sadly, it’s the stigma surrounding the condition that mostly affects quality of life, rather than the condition itself.

Commonwealth Epilepsy Statistics:

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Europe
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Africa
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Asia
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Pacific
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Caribbean & Americas

According to the World Health Organization (WHO):

  • Nearly 80 per cent of people with epilepsy live in low- and middle-income countries.

  • Up to 70 per cent of people living with epilepsy could live seizure- free if they’re properly diagnosed and treated.

  • Three quarters of people with epilepsy living in low-income countries don’t get the treatment they need.

  • In many parts of the world, people with epilepsy and their families suffer from stigma and discrimination.

The WHO estimate:

  • In high-income countries, there are 49 per 100,000 people diagnosed with epilepsy each year.

  • In low- and middle-income countries, this figure can be as high as 139 per 100 000.

  • Close to 80 per cent of people with epilepsy live in low- and middle-income countries.

This is likely due to the variations in medical infrastructure, the availability of preventive health programmes and accessible care.

Many countries have implemented measures to reduce the treatment gap and morbidity of people with epilepsy. Programmes, movements and campaigns such as the Global Campaign Against Epilepsy are designed to train and educate health professionals, combat stigma, identify potential prevention strategies and support integrating epilepsy care into local health systems.

Although these campaigns highlight some simple, cost-effective ways to treat epilepsy in low-resource settings, the statistics tell us that there’s still a long way to go.

epilepsy treatment diagnosis

Epilepsy Facts and Statistics in the Commonwealth

AFRICA

  • 3,367,000 epileptics
  • 80% of people suffering from epilepsy don’t receive any treatment at all
  • 26% higher than the worldwide mean prevalence

In Africa, people with epilepsy are shunned and discriminated against when it comes to education, employment and marriage. The general public perceive epilepsy as a shameful disease and epilepsy information and education are shockingly insufficient. There are myths and superstition surrounding epilepsy which feeds social and cultural stigma. Equally, inadequate health care in relation to epilepsy is the main reason why these statistics are so high.

Data credit: African Health Sciences, Makerere Medical School

ASIA

  • 12,411,00 epileptics
  • 90% of people with epilepsy are inadequately treated or are without conventional antiepileptic therapy
  • 77% of people with epilepsy have no college education

Access to epilepsy treatment varies throughout Asia, although people in remote areas often do not receive any epilepsy care at all. In Asia, people with epilepsy are less likely to marry, be employed or have a college education. In some areas of South-East Asia, epilepsy is looked upon as a consequence or punishment for evil deeds or the breaking of certain taboos. There is a common rural belief that seizures are caused by possession of evil spirits and attempts are often made to exorcise evil spirits.

Data credit: International League Against Epilepsy

EUROPE

  • 6,000,000 epileptics
  • Approximately 20-30% of epileptics have more than one seizure per month
  • 1.9 million people aged 20-64 have active epilepsy

Largely caused by the lack of public awareness, stigma and social isolation are the greatest problem faced by many people in Europe with epilepsy. Directly affecting access to education and employment people with epilepsy often face workplace discrimination and unequal opportunities, even when seizures do not render the work unsuitable or unsafe. A lack of knowledge within the healthcare systems accounts for large numbers of misdiagnosis and inappropriate treatment decisions. The limited guidance offered to patients and care givers contributes to poor quality of life and results in undue major health-related expenses.

Data credit: National Library of Medicine

PACIFIC

  • 9,871,000 epileptics

  • 60% of people living in the Western Pacific Region (WPR) don’t receive basic medical care
  • 11 out of the 20 countries (within the 37 that make up the WPR) have basic diagnostic equipment for epilepsy assessment

A lack of epilepsy data in the Western Pacific Region is evident and possibly very telling. However, enough data exists to suggest that the public health burden of epilepsy in the WPR is similar to that in the rest of the world. Poor treatment access and health care disparities for people with epilepsy may be related to insufficient economic resources, rural isolation, gender, ethnicity and a lack of public and medical knowledge of modern approaches to epilepsy care. Epilepsy attracts significantly less funding and research from public and private sources than other less common chronic neurological disorders. Epilepsy continues to be associated with stigma, due in large measure to a lack of public information and education.

Data credit: The Western Pacific Region and the Global Campaign Against Epilepsy.

CARIBBEAN & AMERICAS

  • 9,468,000 epileptics

  • 70% of affected people are treated with basic drugs

  • 80% of countries in the region don’t have appropriate epilepsy legislation

Epilepsy is one of the most common neurological disorders in the world, affecting approximately 50 million people, five million of whom live in the Region of the Americas. However, it’s estimated that the treatment gap in Latin America and the Caribbean is over 50 per cent, which means that more than half of people with this condition don’t receive health care. According to the PAHO: “In recent years, countries have strengthened their focus on noncommunicable diseases, including epilepsy. Even so, the care of people with epilepsy is still far from satisfactory. This is due to, among other factors, a deficit of trained medical personnel; the unavailability of medicines, particularly at primary health care (PHC) level; and the lack of information and education on epilepsy, both for those affected by the disorder and their families, as well as for the community as a whole.”

Data credit: Pan American Health Organization (PAHO)

Epilepsy statistics for sufferers within the Commonwealth:

*Some figures are estimated and approximate

Epilepsy Thought Leaders

“A lack of understanding and knowledge around epilepsy in Scotland leads to many people with epilepsy being affected by stigma and stereotyping. People with epilepsy are more likely to struggle with their mental health. Depression and anxiety are higher amongst people with epilepsy compared to the general population. UK research further points to epilepsy being more prevalent in areas of social deprivation.”

-Lesslie Young- Chief Executive Officer, Epilepsy Scotland

oscar martinez

“In Argentina, thanks to the increased information and diffusion of epilepsy, the quality of life of people with epilepsy has improved. Surgery is performed for patients with pharmacoresistant epilepsies. However, there are remote regions within our country, which need more attention from the patients. Despite the difficult economic situation of the country, we are working neurologists, neurosurgeons together to create new working groups and continue with information campaigns.”

-Oscar Adolfo Martinez- Medical Neurologist Specialist in Epilepsy, Argentina

“Epilepsy in Colombia is a topic that still needs greater sensitivity. Epilepsy is a disease that affects anyone, at any time in life, because seizures are the main symptom of the condition, it does not warn, it just happens. In our case, I led an organization of patients, mainly children, affected by this disease, but of genetic origin, which requires permanent medical and healthcare support. We constantly raise awareness about the condition, we educate the community and fight for its inclusion, we support research, which allows us to improve the quality of those affected, overcoming all barriers to support those who suffer from this clinical condition.”

-Nohora Ramirez- Psychologist, Columbia

nahora ramirez
prince kazadi

“We hope that by providing free support (to sufferers and families), offering educational programs in schools and the community, combined with active campaigns on awareness and fundraising to support those in need – we can make a huge difference to the lives of people with Epilepsy AND their families struggling for a fair chance in the Democratic Republic of Congo.”

The charity with its limited resources has cared for 2,500 epilepsy patients.

-Dr Prince Kazadi- Founder, Epilepsy Awareness Foundation for the Democratic Republic of Congo

“Epilepsy care in Zambia is mostly by primary healthcare workers,i.e nurses, community health workers, psychiatry clinical officers and general practitioners. This is because Zambia has very few neurologists and are all based at the country’s Tertiary hospital. The current prevalence of epilepsy is not known. A door-to-door survey conducted in rural Zambia (chikankata) by Birbeck and Kalichi in 2004, with a population of approximately 55000 at the time of the survey, found an unadjusted prevalence of 14.5/1000 population. Factors associated with the treatment gap include lack of sufficient knowledge to adequately treat patients with epilepsy in primary health care settings, few specialised professionals (Neurologists), inadequate supply of anti-seizure medications and public attitude towards epilepsy,including prevalent stigma, myths and misconceptions about the disease that have a negative impact on care.”

-Naluca Mwendaweli BSc.HB, MB.ChB (UNZA) FZCMS-MED – Secretary General, ILAE-Zambia Chapter

naluca mwendaweli
Synonymous with world-class teamwork and friendship, The Voice For Epilepsy works tirelessly to support people with epilepsy, raise awareness, eliminate stigma and improve quality of life. Together, we need to make the world aware of the impact epilepsy. Join our cause and get involved today!
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kasam parkar hospital

My Life Story

My name is Kasam Parkar and, I am a 49-year-old living with Epilepsy. I suffered my first seizure at the age of 23 and went undiagnosed in hospital for nearly 2 weeks. Normal life now consists of hospital visits, ambulance rides, recovery from injuries – broken nose, fractured shoulder, cuts forehead, loss of memory for over 5 years.

I have also felt distanced from the life I formerly enjoyed. After many years, new hospitals, new doctors, new medications, altering life habits and an overwhelming amount of support from my family and close friends, my seizures are currently controlled by medication, my seizures can be erratic and occasions I have suffer clusters which exhorts me for the rest of the day.

Advocacy for Epilepsy

I feel the need for advocacy for epilepsy hence I’ve decided to start this epilepsy charity. Many people are unaware of epilepsy and how many people it effects. Additionally, because of the stigma so often attached to it, many people living with epilepsy try there hardest to hide their condition.

Few people are actually willing to step up and talk about epilepsy.

The Voice for Epilepsy’s mission is to spread awareness and be an advocate for those who do not have a voice or are afraid to speak out.

We need to make the world aware of the impact epilepsy has on so many and find a cure. Without a cure, there are far too many people who will never have relief from seizures.

support epilepsy awareness kasam

Advocacy for Epilepsy

I feel the need for advocacy for epilepsy hence I’ve decided to start this epilepsy charity. Many people are unaware of epilepsy and how many people it effects. Additionally, because of the stigma so often attached to it, many people living with epilepsy try there hardest to hide their condition.

Few people are actually willing to step up and talk about epilepsy.

The Voice for Epilepsy’s mission is to spread awareness and be an advocate for those who do not have a voice or are afraid to speak out.

We need to make the world aware of the impact epilepsy has on so many and find a cure. Without a cure, there are far too many people who will never have relief from seizures.

support epilepsy awareness kasam

The Voice for Epilepsy Mission

The purpose of this charity is to raise awareness of epilepsy, building a community of shared experiences giving individuals a voice to connect and feel supported.

The Voice for Epilepsy aims to help individuals with epilepsy to connect and fight; to ensure not another moment is lost to seizures. To offer educate about seizure recognition, seizure first aid and increase understanding about epilepsy in general. To help combat the isolation often associated with epilepsy and to encourage individuals and families to start opening their windows to the world without feeling vulnerable. To establish a principle that epilepsy creates unity and builds strong bonds.

We need to educate people what to do and what not to do when someone is having a seizure, to encourage concerned authorities to take action to improve the lives of people with epilepsy and to provide communities, schools and workplaces with sessions, courses, seminars and presentations to educate on the basics of epilepsy.

Together, we can spread epilepsy awareness!

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