From art to nursing, Rebekah’s background
I like science, and I have always wanted to help people. My first degree was in art but then I decided to go into nursing. After grad school my first role was in a neurology center - specifically in epilepsy, I learned everything on the job. I work at a Level 4 epilepsy center where they do surgery. I see patients with seizures and PNES.
Growing up abroad
I live in Virginia, but grew up abroad as my dad worked for the state department - it was interesting to see the healthcare systems in other countries. I have lived in the Dominican Republic, Prague when it was part of the Soviet Union, and in London. As a result, I love to travel! But COVID has messed that up too. I'm a crazy animal person; I have three cats, two turtles, and one bird. I am an art major and still do a lot of art such as fibre arts, embroidery and quilting.
The day as an epilepsy nurse
I see all sorts of epilepsy; focal onset, generalized onset, Lennox Gastaut Syndrome, I see everyone from surgical candidates to those under control from one medication. I also see patients who transition from pediatrics to adult care, which is a really big deal, particularly for things such as taking their medications.
Overall I have around 1,000 patients, and in the last month I’ve seen at least 300. I work in the Epilepsy Monitoring Unit (EMU), where you try to capture or potentially trigger seizures to characterize and potentially evaluate for brain surgery.
And I also work in-clinic, which is great as I see both inpatient and outpatient. I can tell them what to expect, and make sure they know what is going to happen. My role involves working to ensure patients have insurance in place to get medication affordably or getting them on a patient assistance program. Additionally supporting social needs, such as accommodation letters, school plans and workforce training.
What epilepsy research are you interested in?
I'm always interested in what's ready to get to the patient. I am a member of the American Epilepsy Society, and the American Academy of Neurology which keeps me up to date with the latest research. Particularly new medications, and any trials patients could be a part of. Whenever we prescribe new medications or devices, we obviously want to monitor and track patient outcomes and safety. We want to predict the best way to get someone to seizure freedom.
In our EMU we work with VCU's biomedical engineering school - we currently have a study where electrodes are placed on their brain for language testing. They ask a patient to have a thought, then speak it, we can then map what goes on in the brain. It helps us understand the way the brain and language works.
Advice to newly diagnosed patients
I usually give ‘new to epilepsy’ packets from the Epilepsy Foundation. It's important for patients to know who they can reach out to when questions arise. In your first visit appointment you’re given a whole bunch of resources and information, but only a certain amount is going to stick. Make sure you have a point of contact with a member of your healthcare team, so if you have questions or any issues, you are able to find answers.
I feel it's important for every patient to have a seizure action plan, as every patient has different needs. It’s important to feel empowered in the sense that you know what to do when a seizure occurs. Patients need to make sure they are communicating what their goal is with their healthcare teams, is it seizure freedom? Are the side effects of a medication too bad?
Prepare for your appointments: 15 questions to ask your neurologist
Stand out patient stories
Unfortunately there's a lot of misinformation, especially with women. I've had patients saying, “I can't have kids because I have epilepsy!” Most women with epilepsy can have healthy pregnancies, but you must educate them on the risks.
Experience using the Epsy Hub?
It's wonderful! Previously patients used to bring in a paper log, and it was hard to keep track. The ability to just go into Epsy Hub in an appointment to review their seizures is great. Sometimes a patient sends me a message and says ‘hey, I logged some seizures in Epsy’. It helps me to correlate seizure counts with the change of medication and therapy changes. I love the percentage increases and decreases. It’s a super easy way for the patient to input the data - and for me to then see and evaluate it. It’s convenient for them to see the results there too.
How to get involved with support groups?
I am involved in epilepsy support groups once a month. We used to meet in person before COVID, now we meet on Zoom. A lot of caregivers of pediatric patients attend. Sometimes they have specific questions about medications and social aspects - it's a great opportunity for education! It gives the ability to speak about any questions in a comfortable environment.
Learn more: How to find epilepsy support groups
In Virginia, we have tried to pass a law to keep patients safe. A recently passed law that went into effect last year means that students with epilepsy need to have a seizure rescue plan in school, now we are working on having seizure first aid posted in all workplaces. Trying to advocate is important for me too.