Epilepsy is an invisible disability. However, the impacts of this condition on the people who live with it, as well as their loved ones, are anything but invisible. It can be debilitating to live with if not properly managed, and can change the way people live their lives. Campaigns like Epilepsy Awareness Week (20/05/24 - 26/05/24) are designed to help raise awareness and support. This can lead to positive change and a more informed society, thereby improving the quality of life of people with epilepsy.
What is epilepsy?
Epilepsy is a condition which causes seizures, but not all seizures are caused by epilepsy. There are also many different types of seizures and types of epilepsy, making it a very complex neurological condition. It can have various causes, such as genetics or structural changes/abnormalities in the brain.
There are also numerous triggers for epilepsy, which are separate from the causes. These may include stress, lack of sleep, alcohol, or flashing lights. The ways in which epilepsy impacts daily life can vary from person to person, depending on factors like medication, severity, and type. It’s much more manageable to live with when the proper medication balance keeps it under control, but for some it can cause issues in various aspects of life, such as work and school.
6 ways to support Epilepsy Awareness Week
We may be part way through Epilepsy Awareness Week, but there are still plenty of ways to get involved and show your support for the cause.
1. Spread awareness in your community and via social media
As spreading awareness is the key goal of this campaign, sharing useful information about epilepsy is a great way to get involved. This option can take many forms, from discussing it in your personal community, to sharing information via social media to reach a wider online audience. When taking the latter approach, it’s a good idea to use relevant hashtags, such as #EpilepsyAwarenessWeek. This way, people who see your posts can click the hashtag to learn more, and people looking for useful info can find your post via the hashtag.
Regardless of how you choose to spread awareness, it’s important that you have your facts straight. So, to avoid the potential risk of spreading misinformation, make sure you do your research and only share relevant information from reliable sources. For example Epilepsy Society has developed a new epilepsy awareness video for this campaign, which would be a great piece of content to share online. In addition to the factual and statistical information you may choose to share, personal stories can also be a great way to spread awareness. If epilepsy is a cause close to your heart, whether you have it yourself or know someone who does, sharing a personal experience can raise awareness while making others feel less alone in the process.
2. Participate in awareness events
In addition to personally spreading awareness, attending awareness events is another effective way to support the epilepsy community. These events can vary, but typically involve activities like bake sales, walks, runs, and charity auctions. For example, Epilepsy Action has launched a virtual 10K run or walk, which allows you to raise money for epilepsy at your own pace and at a time that works within your schedule. It simply requires a small sign-up fee and recording your 10K run or walk via their app anytime between 20-26th May. You can do it anywhere, which means there’s no need to worry about travelling to distant destinations or running in unfamiliar locations.
Other organisations may encourage you to run your own events in your local area or at work with your colleagues, allowing the awareness to spread far and wide across the country. For example, Epilepsy Society recommends ‘Lunch N’ Learn’ events. This year, you could share their new awareness video about the effects of epilepsy as part of your event. So, if you can’t make it to the events set out by other organisations, running your own is another excellent way to show your support and raise awareness.
3. Support epilepsy charities and organisations
Epilepsy charities and organisations, especially non-profits, benefit greatly from donations to support their work. So, if you are in a position to donate, anything you give would be greatly appreciated by these organisations. Don’t worry if you can’t give much, as any little helps support research and services which improve the lives of people with epilepsy.
It can be tough to decide which charities and organisations to donate to, as there are multiple worthy options that directly support people with epilepsy. For example, there are some that focus on childhood epilepsy, such as Young Epilepsy, while others are less specific and instead focus on the entire community of people with epilepsy, such as The Voice For Epilepsy. The most important part is choosing a reputable organisation that you feel aligns with what you want your donation to go towards. For example, if there is a specific initiative or event you would like to help fund, that’s a great way to decide which organisation to support. You can also choose to split your donation between different charities.
4. Advocate for policy change
If epilepsy is a cause that hits close to home for you, you may have noticed gaps in policy that could be changed or improved. Whether it’s better support systems in schools or workplaces, or improved access to the best treatment options, there are plenty of ways to advocate for people with epilepsy. First, you’ll need to decide which area of policy you want to focus on. Next, you can select the method through which you would like to perform your advocacy.
Advocacy can be a daunting prospect, but it doesn’t have to be. Being an advocate can be as simple as spreading the word about the changes you seek within your community. It can also be as complex as launching a national campaign to garner widespread support and attention for the issue. In some cases, the former can become the latter naturally as support accumulates through word of mouth. So, take your epilepsy advocacy one step at a time, always reminding yourself and others of the key changes you’re fighting for.
5. Wear purple to show solidarity
Purple is the official colour associated with epilepsy, hence its use in various awareness events and initiatives for the condition. In fact, there is even an annual event called Purple Day, which takes place on 26th March every year. This event was started by a young Canadian girl with epilepsy named Cassidy Megan in 2008. Her goal was to get people talking about epilepsy to help raise awareness for the condition. Cassidy’s decision to include the colour purple was born from the fact that lavender is known as the international flower of epilepsy.
So, if you’re looking for a simple yet effective way to show support during Epilepsy Awareness Week, wearing purple is a great option. It can also serve as a conversation starter, leading to the types of conversations Cassidy was hoping for when she began this movement. If you don’t have enough purple clothes to last you through the week, a purple awareness ribbon can also make a meaningful addition to any outfit. Encouraging your friends and family to wear purple clothes or a purple ribbon helps spread this movement further, allowing the simple act of an outfit choice the potential to facilitate positive change.
6. Directly support those around you with epilepsy
If epilepsy impacts the lives of people around you, make sure to show them some extra care and support during Epilepsy Awareness Week. This could come in many forms, such as escorting them to a doctor's appointment, picking up prescriptions, helping them complete tasks, or just offering a friendly ear when they need someone to talk to. The key is to allow them to decide what type of support they would most benefit from and follow their lead.
It’s also important to remember that epilepsy doesn’t only impact the lives of people who have the condition. It can also have a huge impact on their families and friends. So, even if people you know who have epilepsy aren’t looking for extra support, their friends and family might be. Similarly to helping those with epilepsy, helping those who are impacted by epilepsy indirectly involves following their lead and finding ways to be meaningfully supportive based on their needs.
Key takeaways
Here are the key points to remember about Epilepsy Awareness Week:
- Epilepsy Awareness Week 2024 is the week of 20th-26th May.
- Epilepsy is a complex neurological condition that causes seizures.
- There are plenty of ways to get involved and show support for those with epilepsy and their families.
- You can show direct support by helping out those around you with epilepsy and their families, wearing purple to show solidarity, and sharing useful information in your community and via social media.
- You can also support the cause more broadly by donating to epilepsy charities and organisations, advocating for policy change, and participating in or even organising awareness events.
