Rally for Raegan

Camp Carpe Diem by Children’s Healthcare of Atlanta!

It’s important that every child feel special, and a child with epilepsy or seizure disorder is no different. At Camp Carpe Diem, we promote positive self-esteem with fun and learning. We give every child the chance to experience camp, build friendships and make memories to last a lifetime.

Camp Carpe Diem is a week-long summer camp for kids ages 7 to 18. Started in 2010, Camp Carpe Diem is a place where our patients can get outside, play, learn and make friends with kids who understand what it's like to live with epilepsy.

Camp Carpe Diem | Children's Healthcare of Atlanta Camp Carpe Diem is a place where our patients can get outside, play, learn and make friends with kids who understand what it's like to live with epilepsy.

Sudden Unexpected Death in Epilepsy (SUDEP) is a fatal complication of epilepsy. It is defined as the sudden and unexpected, non-traumatic and non-drowning death of a person with epilepsy, without a toxicological or anatomical cause of death detected during the post-mortem examination.

There are no devices available that have been proven to prevent SUDEP. Yet, since SUDEP most often occurs during sleep, some people with seizures at night may be helped by having a way to let others know if a seizure occurs. Ideally, they could get help more quickly. Here’s some common questions and information about seizure alerts.

The devices can notify nearby family or caregivers when a seizure occurs through alarms, phone calls or text alerts, depending on the device. A caregiver can then help the person during and after the seizure. For example, they can help reposition the person, making sure they are on their side if they are not conscious. They can also make sure someone doesn’t fall asleep on their stomach afterwards. If breathing or other problems occur, they can call for medical help. They may also be able to give rescue medications or call for an ambulance if the seizure lasts too long or the person has repeated seizures.

This week, we received Raegan's Epilepsy Sleep Monitor! We ordered the PulseGuard system from the UK. We learned during a VEEG Sleep Study last year that Raegan's activity is higher at night. In addition to this, most of her seizures are not outwardly evident.

The PulseGuard system was developed for people like Raegan and families like us!

In the UK alone there are 600,000 people with epilepsy, that’s nearly 1% of the entire UK population. 70% of these are children who experience silent seizures often also with no movement, preventing them from being able to use standard seizure detection alarms which are based on these symptoms. PulseGuard does not monitor these symptoms but instead monitors the heart rate, enabling it to alert users and carers if the heart rate increases or decreases with no other visible evidence.

Source(s):
https://pulseguard.org/about-us/
https://www.epilepsy.com/article/2014/3/nighttime-seizure-activity-will-your-family-ever-sleep-peacefully-again

How Can You Become an Epilepsy Advocate?

Through public policy, legal advocacy, and grassroots engagement, you can raise awareness about the issues affecting the epilepsy community and seek positive change. At the Epilepsy Foundation, our advocacy priorities include:

* Ensuring access to quality health care that is affordable, physician-directed, and person-centered
* Ending epilepsy-related discrimination and protecting the rights of people with disabilities
* Raising awareness and promoting education about the epilepsies
* Fostering biomedical innovation by incentivizing the development of new therapies and the promotion of research

Whether you realize it or not, you’re the expert. You know first-hand the challenges that come from living with epilepsy. Without speaking up and telling your story, elected officials may never know what epilepsy is or what issues are important to you. At the Epilepsy Foundation, we can support you with the tools and resources you need to be an effective advocate.

Epilepsy Advocacy There are many ways to get involved as an epilepsy advocate. Learn how to join the cause and raise awareness about the issues affecting the epilepsy community.