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Disney star’s death shows it’s time to end the epilepsy stigma

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Approximately 1 in 26 people in the United States will develop epilepsy at some point in their lives, according to the Epilepsy Foundation.

When the news broke about the tragic death of Disney star Cameron Boyce at age 20, initial reports listed the cause as “an ongoing medical condition.” I remember pausing between patient visits that day, silently wondering if his death was related to epilepsy. If so, would his family have the courage to say so? 

Boyce’s parents' choice to publicly state their son had died of an epileptic seizure – an event known as SUDEP, or sudden unexpected death in epilepsy – shed light on this very real but barely understood complication.

Approximately 1 in 26 people in the U.S. will develop epilepsy in their lifetimes – that’s about 3.4 million Americans. It is estimated that 1 in 1,000 patients with epilepsy succumb to SUDEP.

However, many patients don’t talk about their epilepsy. As common as the condition is, several of your colleagues, friends, acquaintances, or even family members could have it and you might not even know.

I lost a relative to SUDEP over a decade ago, and I know firsthand that this type of loss can be as frustrating as it is sad. There are several physicians in the family, and even so, no one wanted to talk about my uncle’s epilepsy. They didn’t want people to know.

But the truth is that open communication about epilepsy can help reduce tragic deaths and improve seizure management for patients who are most at risk. It’s time to start talking about epilepsy, and the many available treatment options. It is time to break the stigma.

Who is at risk for SUDEP?

Anyone who has seizures could succumb to SUDEP. The most important risk factor is the presence and frequency of generalized tonic-clonic seizures (GTCs or convulsions, which were formerly known as grand mal seizures).

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At UT Southwestern, we are actively building a database of all SUDEP cases we encounter to synthesize information with researchers around the world.

Most are young adults from 18 to 40 years old (particularly young males in their 20s to 40s). Also at increased risk are patients with severe or uncontrolled epilepsy and those who do not take their medication(s) as prescribed

The mechanisms of SUDEP are still uncertain, though various studies suggest death might be a result of brain, heart, or breathing complications after a seizure.

Researchers around the world are actively working toward learning more about potential causes of SUDEP and ways to reduce deaths. For example, in our institution we are actively building a database of all SUDEP cases we encounter. Our goal is to collect data, along with researchers worldwide, to synthesize information and determine potential causes and risk factors for SUDEP in persons living with epilepsy.

In the interim, it is our responsibility to educate patients and their families about SUDEP and offer tips for talking about epilepsy with people close to them.

'I know firsthand how sad and frustrating it can be to lose a relative to SUDEP. There are several physicians in my family, and even so, no one wanted to talk about my uncle’s epilepsy. They didn’t want people to know. ... The more people know about epilepsy and are comfortable discussing it, the more we as a community can help. '

Sasha Alick, M.D.

Talking about epilepsy with friends and colleagues

Tips for patients

Inform your coworkers. You don’t have to shout about your condition or publish it in the company newsletter, but it’s a good idea to let trusted colleagues in your work area know you have epilepsy. If you have a seizure at work, people around you need to know how to respond.

The U.S. National Library of Medicine offers a list of seizure DOs and DON’Ts for bystanders, along with seizure symptoms and quick safety tips you can share with colleagues. For example, make sure they know not to put a finger or anything else in your mouth to prevent you from “swallowing your tongue” – this is an old wives’ tale. Instead, they should try to keep you from falling, turn you on to your side, time it, and stay with you until the seizure subsides or help arrives.

Witnessing a seizure can be scary. Let people around you know what to expect, and when they should call 911. They should call for emergency help if you:

  • Have trouble breathing or walking after the seizure
  • Have a seizure that lasts longer than five minutes
  • Experience another seizure right after the first
  • Get hurt during the seizure
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Talking to friends and co-workers about your epilepsy can promote understanding and create a valuable support network.

Answer questions. Though epilepsy is not rare, many people are unfamiliar with the condition. In short, epilepsy is a neurological disorder caused by abnormal electrical activity in the brain, which can lead to transient changes in behavior, movement, thinking, feeling, or level of consciousness. Seizures do not only consist of shaking like movies lead you to believe. The signs and symptoms of a seizure depend of which part of the brain is “misfiring” or being affected.

If curious people ask questions, answer to the best of your ability. The more people know about epilepsy and are comfortable discussing it, the more we as a community can help patients control their seizures and reduce the risk of injury and SUDEP. 

Be honest with your doctor. Many patients hesitate to discuss with their doctors the frequency and severity of their seizures. Some might fear they’ll lose their driver’s license or other freedoms. Others simply don’t understand how serious the condition can be. 

Uncontrolled seizures can lead to memory changes, depression, and anxiety. Women with epilepsy must follow certain precautions before, during, and after pregnancy to reduce the risk of complications. As in the case of Cameron Boyce, seizures can also be fatal.

Your doctor wants you to enjoy a high quality of life, but we can’t read your mind. Honest, open communication helps guide you to the proper treatment, whether it be medication or surgery

Inside the Epilepsy Monitoring Unit

At UT Southwestern, epilepsy patients who are having uncontrollable seizures are evaluated by a multidisciplinary team of neurologists, nurses and EEG technicians. They record seizures as they happen in hopes of developing the best treatment option for each patient.

When it's time to consider a new therapy

If you’ve tried certain medications or procedures with limited effects, talk to your doctor. UT Southwestern offers advanced epilepsy procedures that can dramatically reduce a patient’s seizures – or even stop them all together. Some of these include:

  • Responsive neurostimulation (RNS or NeuroPace): monitors brain activity and responds to abnormal activity with electrical pulses to stop seizures like a “brain pacemaker.”
  • Vagal nerve stimulation (VNS): may lessen or even prevent seizures by sending regular, mild pulses of electrical energy to the brain through the vagus nerve.
  • DBS (deep brain stimulation): approved for the treatment of intractable epilepsy in the US in 2018, this therapy has been used for many years to treat other neurologic conditions, such as Parkinson’s disease.
  • Laser interstitial thermal ablation (LITT or laser therapy): less invasive, precision removal of affected brain tissue using MRI to map out the exact area and subsequently heating the tissue to be removed.
  • Magnetoencephalography (MEG): A noninvasive tool to study brain function and epilepsy by measuring small electrical currents inside the neurons of the brain. MEG is typically used for presurgical planning. We are one of only a few centers in the U.S. that use MEG.Stereo EEG: intracranial brain monitoring using electrodes in the brain to pinpoint where seizures are coming from and mapping specific brain functions for presurgical planning.
  • Clinical research trials: We conduct the latest and most innovative medication and technology trials.

Related reading: 10 epilepsy treatments – from lowest to highest risk

Tips for friends and loved ones

Express your support. For some patients, it takes a lot to open up about health conditions. Let your colleague or loved one know you’re there for them and open to learning about seizures and epilepsy.

Check in. Patients with epilepsy sometimes feel tired or disoriented when adjusting to a new medication or dosage. Epilepsy can also lead to anxiety and depression – friendly check-ins can mean the world to someone who might feel isolated.  

Help create a plan. If your colleague or loved one has a seizure disorder, offer to help draft a safety plan to share with his or her teammates. For example, you could work together to compile a list of facts or directives he or she is comfortable sharing, such as known triggers to avoid or emergency contact information. Find more information on the Epilepsy Foundation website.

Reduce risks through honest communication

My uncle died of a seizure disorder more than 10 years ago. He’d had epilepsy for years, but no one ever talked about it. Growing up, I’d always hear, “He’s different. He’s a little depressed.” He would show up with bumps and bruises, and everyone was hush-hush. I’d learn later that those injuries were due to falls during seizures.

Not long after I started my neurology residency training, I received a call that my uncle had passed away. When I asked what happened, the reply was, “Well, he had that condition…” 

It makes me upset to know that there were so many options for my uncle, had everyone who knew been more willing to communicate about his epilepsy. He’d been taking an outdated medication for years and was not followed by a neurologist, so his seizures were uncontrolled. That heartache, like many other SUDEP events, potentially could have been prevented. 

It’s important for patients to understand there is no reason to be ashamed of having epilepsy. We encourage our patients at UT Southwestern’s level 4 epilepsy center to keep a seizure diary in order to detect patterns and triggers, as well as to openly communicate with us about what is and isn’t working. 

Unfortunately, Cameron Boyce’s story ended tragically – many people didn’t even know he had epilepsy. However, his untimely death has given voice to patients and families across the country.

Epilepsy is treatable and manageable for most patients. See a specialist sooner to reduce your risk of SUDEP and other serious complications. Call 214-645-8300 today or request an appointment online

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