Author Archives: Darryl

The Power of Volunteering: Making a Difference with Epilepsy Durham Region

April 16, 2024

Volunteering is a cornerstone of community support, fostering connections, empathy, and positive change. At Epilepsy Durham Region, we understand the invaluable impact of volunteers in our mission to raise awareness and support individuals affected by epilepsy. Let’s recognize and celebrate every volunteer and each contribution they’re making to strengthen inclusivity and wellbeing in our community. Now more than ever, Every Moment Matters! Let’s delve into why volunteering is essential, explore its benefits, and outline the various volunteer positions we have available.

We would like to extend our heartfelt appreciation to all those who have dedicated their time and effort to volunteer with us at Epilepsy Durham Region. To our current volunteers, your ongoing commitment and passion drive our mission forward, making a tangible impact on the lives of individuals living with epilepsy in our community. And to those who have volunteered with us in the past, your contributions have laid the foundation for the positive changes we continue to enact. Each one of you plays a vital role in strengthening inclusivity and support for individuals affected by epilepsy, and for that, we offer a big thank you. Your dedication embodies the spirit of community and compassion that defines our organization, and we are immensely grateful for your continued support. Together, we are making a real difference, one moment at a time.

Why Volunteer?

Volunteering is not just about giving; it’s about receiving too. When individuals offer their time and skills, they become part of something larger than themselves. Volunteering provides a sense of purpose, belonging, and fulfillment. It allows individuals to contribute to causes they’re passionate about while making a tangible difference in the lives of others. For those involved with Epilepsy Durham Region, volunteering means joining a supportive community dedicated to improving the lives of those affected by epilepsy.

The Benefits of Volunteering:

  1. Personal Growth: Volunteering offers opportunities for personal growth and development. Whether gaining new skills, building confidence, or discovering passions, volunteers often find themselves enriched by their experiences.
  2. Social Connection: Volunteering fosters social connections and networks, combating feelings of isolation and loneliness. It brings people together, forging meaningful relationships built on shared values and common goals.
  3. Health and Well-being: Numerous studies have shown that volunteering can have positive effects on mental and physical health. The act of giving back releases endorphins, reduces stress, and boosts overall well-being.
  4. Professional Development: Volunteering can enhance one’s professional skills and resume. Whether through leadership opportunities, project management, or networking, volunteers can gain valuable experience that can translate into career advancement.

Meet Marla:

Meet Marla, a remarkable individual whose journey with epilepsy led her to Epilepsy Durham Region. Diagnosed with epilepsy at 16, Marla struggled alone to navigate the challenges associated with her condition. However, with proper medication and support, she gained control over her epilepsy.

New to Durham Region and interested in getting involved in her community in new ways, it was at an Epilepsy Durham Region event that Marla had an epiphany. Inspired by the organization’s dedication to raising awareness and supporting individuals like herself, she decided to volunteer her time. From assisting with events to sharing her story, Marla has become an integral part of the Epilepsy Durham Region community, empowering others and raising awareness one step at a time.

Volunteer Positions Available:

  1. Web Development: We’re seeking volunteers with experience in WordPress and web development to assist with website updates and maintenance.
  2. Event Support: Volunteers are needed to support various events throughout the year, including our Golf tournament and other fundraisers. From logistics to participant engagement, your assistance is invaluable.
  3. Storytellers: We invite individuals to volunteer to share their personal stories with us. By sharing your journey with epilepsy, you help us raise awareness and foster understanding within our community.

Volunteering is a transformative experience that not only benefits the people in our community living with epilepsy but also enriches the lives of those who give their time and effort. At Epilepsy Durham Region, volunteering is at the heart of our mission, driving positive change and support for individuals affected by epilepsy. Whether through website development, event support, or storytelling, there are countless ways to get involved and make a difference. Join us in our commitment to raising awareness, fostering support, and empowering individuals on their journey with epilepsy.

Contact us today to get involved or click here to fill in our online form.

Volunteer Application Form

Aydin’s Courage: Help Uplift Lives Through Epilepsy Empowerment

March 26, 2024

Empower Aydin.

Imagine facing the world with 100 daily seizures, navigating through the uncertainty of 10 different medications, and enduring the hopes and disappointments of numerous treatments–all before turning 16. This is Aydin’s reality. But it’s not what defines him; it’s his unyielding courage and advocacy for epilepsy awareness that makes him a true inspiration.

At 11 years old, Aydin bravely shared his experience being bullied at school: “It was grade three when someone started bullying me. They were calling me a “spaz” and “seizure boy” and somebody pretended to have a seizure…things would be a lot different knowing that I could go to school without constantly being bullied by people because of my epilepsy.”

Aydin is now 16 years old and continues to advocate for himself and those in the epilepsy community. Despite the relentless challenges, including a rare diagnosis of Lennox-Gastaut Syndrome at 12 years old and the shadow of SUDEP (Sudden Unexpected Death in Epilepsy), Aydin tries to find ways to cope with the mental health challenges that often accompany living with epilepsy. Last year, he wrote and recorded a song to help process his daily struggles with the disease, but he also is looking for more community support to know he is not alone. Watch this video to hear directly from Aydin and his mom, Melike. His story is a powerful reminder of the invisible battles many face, the crucial need for increased mental health support and the profound impact we can have by offering our support.

March 26th is Purple Day, our national day for Epilepsy Awareness! We invite you to join us in making a tangible difference in the lives of adults and youth navigating stigma and mental health challenges in their journey with epilepsy. By joining our Epilepsy Empowerment Giving Circle with a monthly contribution of just $25 (less than $1 a day!), you can provide sustainable support for our mental health program PROJECT UPLIFT and make it possible for us to take the next crucial steps forward in creating a youth-adapted version, tailored to empower young individuals like Aydin. Your generosity today will help us reach our goal of $3,000/year to sustainably run an annual 8-week session of UPLIFT and help move us towards adapting this vital program for youth, providing them with the unique support and resources they deserve.

I Want to Join the Epilepsy Empowerment Giving Circle!

Aydin’s story is a call to action. Having to move between 4 different schools and enduring countless hospital stays, his journey highlights the urgent need for specialized epilepsy support services. Your monthly gift ensures that no young person has to face epilepsy alone. It’s more than a donation; it’s a pledge to stand with those battling epilepsy, offering them hope and empowerment.

We are 10 monthly supporters away from transforming the lives of many. Will you be one of the remarkable individuals to answer this call? Join our Epilepsy Empowerment Giving Circle today and light a path of hope for those like Aydin.

Every gift brings us closer to a world where epilepsy is not a barrier to a fulfilled life. The initial North American pilot of Project UPLIFT found that UPLIFT participants had improved depression, anxiety, and psychological quality of life – even a full year after they finished the program. Join us in making this vision a reality for Aydin and so many others in our community by becoming a monthly supporter today.

DONATE NOW

The Epilepsy Puzzle: Types, Triggers, and Dispelling Common Myths

January 29, 2024

Epilepsy, a neurological disease characterized by recurrent seizures, has long been shrouded in misconceptions and misunderstandings. Yet, with advancements in medical research and increased awareness, we’re gradually demystifying this condition. In this blog, we delve into the various types of epilepsy, explore its causes, and debunk prevalent myths, aiming to foster a deeper understanding of this complex disorder.

Understanding Epilepsy:

Epilepsy manifests through seizures, which are disruptions in the brain’s electrical activity. These seizures can vary widely in their presentation, duration, and impact on the individual. Broadly categorized into two types—focal and generalized seizures—epilepsy encompasses a spectrum of manifestations.

  1. Focal Seizures: Formerly known as partial seizures, focal seizures originate in a specific region of the brain. Symptoms depend on the affected area and may include altered emotions, twitching, or sensory changes. Focal seizures can be further divided into two subtypes:
    • Focal aware seizures (previously known as simple partial seizures) where consciousness remains intact.
    • Focal impaired awareness seizures (previously known as complex partial seizures) which may involve altered consciousness or confusion.
  2. Generalized Seizures: Generalized seizures involve widespread electrical disturbances across the brain from the outset. These seizures affect both hemispheres of the brain and can cause loss of consciousness and dramatic muscle contractions. Generalized seizures comprise several subtypes:
    • Absence seizures, characterized by brief lapses in awareness often mistaken for daydreaming.
    • Tonic seizures, marked by muscle stiffness.
    • Clonic seizures, characterized by rhythmic jerking movements.
    • Tonic-clonic seizures (formerly known as grand mal seizures), which involve stiffening followed by jerking motions and loss of consciousness.

Common Causes and Risk Factors:

Understanding the causes of epilepsy is crucial for effective management and treatment. While the exact cause remains unknown in many cases, several factors contribute to its development:

  • Genetic predisposition: Individuals with a family history of epilepsy are at a higher risk.
  • Brain injuries: Traumatic brain injuries, strokes, brain tumors, or infections can trigger epilepsy.
  • Developmental disorders: Conditions such as autism or neurofibromatosis increase the likelihood of epilepsy.
  • Infectious diseases: Infections like meningitis or encephalitis can lead to epilepsy.
  • Prenatal factors: Maternal drug use, infections, or oxygen deprivation during birth can increase epilepsy risk in children.

Dispelling Myths and Misconceptions:

Epilepsy has been surrounded by myths and stigma throughout history, leading to social isolation and discrimination for those affected. Let’s debunk some common misconceptions:

  • Myth: Epilepsy is contagious. Fact: Epilepsy is not contagious; it’s a neurological disorder.
  • Myth: Seizures are always violent and life-threatening. Fact: While some seizures can be dramatic, many are brief and manageable.
  • Myth: Epilepsy only affects children. Fact: Epilepsy can affect individuals of all ages and intellectual abilities.
  • Myth: People with epilepsy can’t lead fulfilling lives. Fact: With proper treatment and support, many people with epilepsy live active and fulfilling lives.

Understanding epilepsy involves unraveling its complexities, from the diverse types of seizures to the myriad of underlying causes. By dispelling myths and misconceptions, we pave the way for greater acceptance and support for individuals living with epilepsy. Through continued research, education, and advocacy, we strive for a future where epilepsy is not defined by stigma but by understanding and empowerment.

References:

  1. Fisher, R. S., Acevedo, C., Arzimanoglou, A., Bogacz, A., Cross, J. H., Elger, C. E., … & French, J. A. (2014). ILAE official report: a practical clinical definition of epilepsy. Epilepsia, 55(4), 475-482.
  2. Scheffer, I. E., Berkovic, S., Capovilla, G., Connolly, M. B., French, J., Guilhoto, L., … & Perucca, E. (2017). ILAE classification of the epilepsies: Position paper of the ILAE Commission for Classification and Terminology. Epilepsia, 58(4), 512-521.
  3. Thurman, D. J., Beghi, E., Begley, C. E., Berg, A. T., Buchhalter, J. R., Ding, D., … & Sander, J. W. (2011). Standards for epidemiologic studies and surveillance of epilepsy. Epilepsia, 52, 2-26.
  4. World Health Organization. (2019). Epilepsy: Key facts. Retrieved from https://www.who.int/news-room/fact-sheets/detail/epilepsy

Countdown to 2024: Meet Randy, A Devoted Supporter with a Heartwarming Journey!

December 18, 2023

2023 is almost over! Before the clock strikes midnight, we’re inspired to share the journey of one of our devoted supporters.

Meet Randy. His involvement with Epilepsy Durham Region began serendipitously at a golf tournament fundraiser, where the infectious spirit of our team, donned in their distinctive goofy pants, captured his attention. Following this he sparked a friendly fundraising challenge with his colleague and joined future events. Randy’s commitment grew, leading him to join our EPIC Golf Tournament committee. However, what motivates him extends beyond these events.

Randy insists: “It’s the determination, passion, and commitment that the staff have shown, the genuine sense of community that’s fostered, and hearing the stories of the kids diagnosed with epilepsy and all they go through…for me, that’s what makes supporting Epilepsy Durham Region feel like the right thing to do.”

Do you set New Year’s resolutions? We do! Epilepsy Durham Region has big goals for 2024, but we need your support to reach them. We have a $15,000 goal to meet before 2023 comes to a close. This will help make it possible to:

  • Relaunch PROJECT UPLIFT to enrich mental health wellbeing 
  • Expand the reach of our epilepsy education programs
  • Increase the number of individuals and families served in 2024

Will you join us?

We can make an even bigger difference in our community with you by our side. Help us provide vital support to children and adults living with epilepsy with a donation tonight. Your gift of any amount helps make kids like Kaydance, and her mama Heather, receive the essential and holistic care they need to successfully navigate the healthcare system, safely attend school, and continue to overcome the daily challenges of living with this disease. Together, we can make 2024 a better year for community members like Kaydance, Heather and many others. Are you with us?

Join Randy and others in making a meaningful difference in the lives of families like Kaydance and Heather by donating tonight.

DONATE NOW

DID YOU KNOW? A $50 donation goes a long way: It’s enough to cover a one on one counselling session and resources to a family to help them better understand living with epilepsy. A $200 donation can provide one school with our epilepsy education training. To donate before midnight, click here!

Heather and Kaydance’s Journey and How Your Generosity Paves the Way for Brighter Tomorrows!

December 18, 2023

Meet Heather and Kaydance. Two of our incredible community members who want to share their story with you. Heather is a single mom of three children, and her middle child, Kaydance was diagnosed with epilepsy at age 3.5. Kaydance’s epilepsy is complex with multiple seizure types; she uses medications, VNS and Deep Brain Stimulation as treatments to lessen the impacts of seizures, but still her seizures are only reduced, not eliminated. Kaydance is now 17 but continues to need a similar level of support and care that she did when she was first diagnosed with the disease 14 years ago.

Kaydance’s favourite activities involve spending time with her mama, helping plant flowers and vegetables in the garden, dressing up as Elsa to go trick-or-treating with her cousin and spending time laughing with her little brother. She loves chicken nuggets, the colours pink and purple, and her favourite place to visit is where the princesses live! A Disney cruise where she met all her favourites: Ariel, Rapunzel, Elsa, and Anna. Heather shares with us that she has done everything she can to advocate and care for Kaydance, and that “anything that’s good for Kaydance is what I’m going to do”. Even as Heather does all she can, she wants others to know that, “children with epilepsy suffer quite immensely.” 

Heather and Kaydance participated in a documentary titled, “Seizing Hope”. More details of their story are shared here: https://www.seizinghopefilm.com/

Despite the many challenges that Heather has faced as a mom and primary caregiver to Kaydance, her face lights up when she shares,Kaydance brings me joy. No matter how much of a hard day I’ve had, and how much she goes through with her struggles, she has a smile on her face every day.”

With Sick Kids Hospital being a far drive away, Heather and Kaydance connected with Epilepsy Durham Region years ago to find epilepsy support in their local community. Heather participates in our Caregiver Support Group, Clinic to Community program, and accesses educational and advocacy support for Kaydance as she navigates challenges with attending school. Heather recounts,

“I’ve always been able to reach out to Epilepsy Durham Region. I appreciate them more than I can say, to be quite honest. As a parent, you feel like you know your child the most, but you always have questions in the back of your head. Am I doing the right thing? After being involved in Epilepsy Durham Region’s educational workshop last year, I even learned things that I didn’t know after dealing with this for 13 years.”  

Without your financial support, we cannot grow our programs and capacity to come alongside more members of our epilepsy community in Durham Region. Heather reflects that without the support she received, she would still be questioning the knowledge and ability of Kaydance’s teachers to care for her at school, and may not even feel comfortable with her attending. Having this confidence has had incredible ripple effects. Now Heather can return to work to support her family. Otherwise, she would need to provide full-time care to her daughter, putting her livelihood in jeopardy.

The stakes are high for our community members, and we need your help to increase our capacity to support more families like Heather and Kaydance who often don’t know where to turn after receiving a life-changing epilepsy diagnosis. We are doing everything we can to serve as many individuals and families as possible, but we need your help.

Kaydance’s story is more than an account of challenges; it’s a testament to the impact of your generosity. Your contributions enable moments of joy in the midst of great challenges, opportunities for growth and connection, increased epilepsy awareness and understanding. These are the building blocks of a hopeful future for Kaydance and others like her. Together, we’re not just supporting individuals with epilepsy; we’re making a way forward for strength, unity, and the promise of brighter tomorrows. Will you help us build a hopeful future for others like Kaydance in 2024?

DONATE NOW

We need to raise $15,000 before 2023 comes to a close. This will help make it possible for us to provide vital mental health support through Project UPLIFT, expand our epilepsy education and advocacy programs, and increase the number of individuals and families we can dedicate ourselves to serving in the new year. If you haven’t had the chance yet, help us finish the year strong with a special year-end gift.

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Champions for Holistic Epilepsy Care: Dr. Florez and You!

December 18, 2023

Dr. Florez is a Colombian doctor trained in neurology at the University of Toronto. He began his medical journey driven by a desire to make a meaningful impact on people’s lives, leading him to a specialization in epilepsy research and practice.

Now he treats patients in Durham Region through the Oshawa Clinic. His commitment extends to community practice, aiming to optimize patient care and education, thereby reducing socioeconomic and mental health harms caused by delays in accessing epilepsy expertise.

Dr. Florez’s collaborative efforts have resulted in the growth of a group of 15 doctors dedicated to a community epileptology practice in the GTA, showcasing a distinctive and impactful initiative in the field.

Dr. Florez enjoys witnessing the positive transformations of patients under his care, particularly when patients share their achievements after overcoming epilepsy-related challenges. “When I tell them ‘well, from now on, I’m only going to follow up with you once a year’…and seeing them succeed in life at the same time that they have been diagnosed with epilepsy brings me a lot of joy.”

He finds fulfillment in the impact made on patients’ lives, observing them earn degrees, pursue careers, build relationships, and start families, demonstrating the immeasurable positive influence of epilepsy management. He also takes pride in challenging traditional norms by proving the effectiveness of community-based epileptology, gaining recognition for his pioneering efforts even within academic circles. Dr. Florez’s commitment to reducing the gap in patient care and advocating for swift referrals reflects a dedication to creating a more efficient and impactful system for epilepsy patients.

Dr. Florez emphasizes the benefits of patients getting involved in community epilepsy organizations, like Epilepsy Durham Region, highlighting the medical and mental health advantages. He notes that patient involvement in our community becomes particularly important when they face challenges such as accessing social programs, accommodations at work or school, or coping with the acceptance of their diagnosis. He insists:

“The medical difference is that involvement with an epilepsy community organization helps to reinforce a patient’s self-management strategies. This set of strategies make a difference in addressing epilepsy and seizure disorders. It’s probably half the key to the success of getting control of the disease. The other half is having a doctor like myself choose the right medication. Let’s say, you don’t have access to work accommodations. You don’t have a support group. You don’t have someone that you can talk to about the diagnosis and you are struggling with depression and anxiety (which is a comorbidity of epilepsy). All those things are detrimental to self-management strategies. So I tell them, for your management, it is important to connect with an organization like Epilepsy Durham Region to help you to actually live out your self-management strategies. That’s where the benefits of community care can be directly linked.”

He recognizes the direct link between patient care and community involvement, highlighting Epilepsy Durham Region’s role in strengthening the coping mechanisms and strategies that contribute significantly to epilepsy management.

Providing holistic support that reinforces successful outcomes for individuals managing epilepsy doesn’t happen without you in our corner. We’re thankful that you’re a part of our team. Together, we can see even more lives changed in 2024.

Will you continue your support and help our clients receive the community care they need to successfully manage their epilepsy diagnosis? 

DONATE NOW

We have a $15,000 goal to meet before 2023 comes to a close. Click the button above to send a special year-end gift and join us in serving individuals and families impacted by epilepsy now and into the new year. 

Did you know that a gift of $100 can provide a family with resources and access to our Clinic to Community program?

Navigating the Holiday Season with Epilepsy: A Guide to Self-Care and Celebration

December 7, 2023

The holiday season is upon us, bringing with it a whirlwind of emotions that can be both joyous and challenging. For those living with epilepsy, as well as their loved ones and caregivers, the festive season may evoke a range of feelings, from happiness and love to loneliness and anxiety. In the midst of celebrations, it’s crucial to prioritize self-care and manage potential triggers to ensure a safe and enjoyable holiday experience. This blog post offers some thoughtful insights on navigating the holiday season with epilepsy, emphasizing the importance of well-being and meaningful connections.

  1. Prioritize Self-Care: The hustle and bustle of the holidays can be overwhelming, leading to exhaustion and stress. For individuals with epilepsy, lack of sleep and increased stress can exacerbate seizures. Prioritize self-care by getting enough rest and managing stress levels. Remember, taking care of yourself is the first step towards a fulfilling holiday season.

  2. Identify and Manage Triggers: Understanding your seizure triggers is essential during this time. If you’re sensitive to flashing lights or excessive stimuli, be cautious around elaborate Christmas displays. Consider shopping in smaller stores to avoid overwhelming environments. Pacing yourself and being mindful of triggers can contribute to a more comfortable and seizure-free holiday experience.

  3. Embrace the True Spirit of the Holidays: Shift the focus from material goods to the essence of the holiday spirit. Share your time and love with others, emphasizing meaningful connections over extravagant gifts. Reflect on the joy of giving and receiving, fostering a sense of gratitude that transcends material possessions.

  4. Address Mixed Emotions: Mixed emotions are a common part of the holiday season. Take the time to acknowledge and address these feelings. Connect with a trusted friend or counselor to discuss your emotions and create a plan for managing them. Reflect on cherished memories and find ways to celebrate the positive aspects of the season.

  5. Maintain Special Diets: If you follow a special diet for epilepsy, ensure that your dietary needs are met during holiday gatherings. Communicate your requirements to those hosting the event, or consider bringing your own food. Prioritizing your health and well-being includes staying consistent with your dietary regimen.

  6. Stay Committed to Medication: Maintain your regular medication schedule, and bring extra medication if you’re traveling. Having a supply of rescue medicine or a VNS magnet is advisable, especially in case of unexpected changes in travel plans. Share your Seizure Response Plan with trusted companions, ensuring they are aware of necessary precautions.

  7. Be Prepared for Emergencies: Carry essential information with you, including the name and contact details of your healthcare team. Having a plan in place and sharing it with those traveling with you will empower you to manage seizures or clusters effectively, should they occur during the holiday season.

  8. Stay Flexible with Plans: While it’s essential not to let seizures hinder your plans, maintaining flexibility is equally important. Be open to adjusting plans if needed and consider alternative ways to connect with friends and family, such as online gatherings. Prioritize your well-being while adapting to the circumstances.

As the holiday season unfolds, let’s embrace a spirit of compassion, understanding, and self-care. By taking proactive steps to manage epilepsy and prioritizing well-being, individuals and their loved ones can create meaningful and joyful holiday memories.

Epilepsy Durham Region is wishing everyone a safe, happy, and fulfilling holiday season.

Take Your Impact to the Next Level: Join us for Giving Tuesday!

November 21, 2023

This Giving Tuesday Take Your Impact to the Next Level with Us! Enjoy our Announcement Video from our Executive Director, Chelsea Kerstens.

Giving Tuesday is just around the corner, and this year, we at Epilepsy Durham Region are excited to embark on a special mission to expand our education and advocacy efforts, and to grow our circles of support. We invite you to join us in this endeavour and make a real difference in the lives of those affected by epilepsy.

Epilepsy is a disease that affects millions of individuals and families worldwide, and it’s time for us to come together and spread awareness, offer support, and advocate for change.

By inviting just one person to join you in signing up for our newsletter, you can play a crucial role in this important mission. You will immediately receive a FREE shareable educational resource and automatically be entered to WIN an EDR plush dog!

Join us this Giving Tuesday, November 28th. Together we are making waves and creating positive change!

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Breaking the Silence: SUDEP Awareness and Action

October 18, 2023

Every year on October 18th, the global epilepsy community comes together to observe International SUDEP Action Day. This day serves as a reminder of the importance of understanding and addressing Sudden Unexpected Death in Epilepsy (SUDEP). For individuals living with epilepsy and their loved ones, SUDEP can be a source of great concern. In this blog post, we will delve into understanding SUDEP, its prevalence, ways to reduce the risk, and offer support for families and caregivers who may be living in fear.

For a personal story – please take a read here to learn more about how a family has been impacted by SUDEP: Fighting Epilepsy in Memory of Micayla

Understanding SUDEP

SUDEP is a tragic and devastating event where an otherwise healthy individual with epilepsy dies suddenly and without explanation. This occurs usually during or after a seizure, and no other cause of death can be identified through autopsy. While rare, SUDEP is a stark reality for some within the epilepsy community.

Statistics and Prevalence of SUDEP

Though rare, SUDEP is a significant concern. It’s estimated that SUDEP occurs in about 1 in every 1,000 people with epilepsy each year (Harden et. al., 2017). While SUDEP can affect individuals of all ages, it’s more commonly reported in younger individuals, particularly those aged 20-40. The risk of experiencing SUDEP is closely tied to the frequency and control of seizures. Individuals with frequent and uncontrolled seizures face a higher risk, while those with infrequent seizures or well-managed epilepsy have a lower likelihood of experiencing SUDEP.

The presence of additional medical conditions alongside epilepsy can potentially increase the risk of SUDEP. Conditions such as cardiovascular issues or respiratory disorders may contribute to a higher risk profile. These statistics highlight the importance of understanding SUDEP and taking proactive measures to mitigate its risk.

Reducing the Risk of SUDEP

While we cannot eliminate the risk entirely, there are steps that individuals with epilepsy can take to reduce the likelihood of SUDEP:

  1. Medication Adherence: Consistently taking prescribed medications is crucial in managing seizures.
  2. Regular Medical Check-ups: Regular visits to a healthcare provider can help in monitoring seizure activity and making necessary adjustments to treatment plans.
  3. Seizure Diaries and Monitoring Devices: Keeping track of seizures can provide valuable insights for healthcare providers. Additionally, specialized monitoring devices can alert caregivers in the event of a seizure.
  4. Lifestyle Adjustments: Adequate sleep, stress management, and avoiding triggers can contribute to better seizure control.

Support for Families and Caregivers

Living with the fear of SUDEP can be incredibly challenging for families and caregivers. It’s important to seek support and resources to navigate this emotional journey:

  1. Professional Counselling and Therapy: Mental health professionals can offer coping strategies and emotional support.
  2. Support Groups: Connecting with others who are experiencing similar concerns can provide a sense of community and understanding. If you’d like to take part in our support groups, please email clientservices@epilepsydurham.com to join.
  3. Education and Awareness: Learning more about SUDEP and epilepsy can empower families and caregivers to better support their loved ones.

Resources and Support Organizations

For additional information and support, consider exploring the following resources:

Understanding SUDEP is a critical step in providing the best care and support for individuals living with epilepsy and their families. By being informed, proactive, and seeking the right resources, we can work towards reducing the risk of SUDEP and offering a stronger support network for those who need it most.

References:

  • Hesdorffer, D. C., & Tomson, T. (2011). Sudden unexpected death in epilepsy: potential role of antiepileptic drugs. CNS drugs, 25(5), 421-432.
  • Harden, C., Tomson, T., Gloss, D., Buchhalter, J., Cross, J. H., Donner, E., … & French, J. A. (2017). Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society. Neurology, 88(17), 1674-1680.

Ryan’s Walk for Epilepsy

October 11, 2023

Meet Ryan

Ryan has been a dedicated volunteer of Epilepsy Durham Region’s for over a year, and he is committed to helping other individuals like himself to live well with epilepsy and know that they are not alone.

Through his volunteer work, Ryan helped to establish the Durham College Epilepsy Association, where he sits as the student facilitator. He aims to raise public awareness about epilepsy, and ensure that students feel that their school is a safe and inclusive environment for people with epilepsy.

This year, Ryan will be joining Epilepsy Durham Region for the Walk for Epilepsy in partnership with the Durham Community Foundation. Please help to show you support for Ryan below.

“I just want everyone to feel like they belong, and to know that they can do great things. THIS is a space where people with epilepsy can feel that, the way I have.” – Ryan

Join us in supporting Epilepsy Advocate, Ryan, as he walks 5km for people with Epilepsy