Emilia Clarke works to end stigma around brain injury

When Game of Thrones debuted on HBO in 2011, it gave then-24-year-old actor Emilia Clarke the first meaty role of her career: Daenerys Targaryen, otherwise known as Khaleesi of the Great Grass Sea, or Mother of Dragons. Clarke's performance as Daenerys would earn her four Emmy nominations as Game of Thrones went on to become one of the era's most talked-about shows, running for eight seasons and winning a total of 59 Emmys, including Outstanding Drama Series four times. In the course of playing an "incredibly strong woman," the British actor commented in a 2019 HBO video, "the strength I had to find to play her [allowed me to see] that I had that strength myself."

Shortly before the final season premiered in 2019, Clarke revealed the source of that strength in an article she wrote for the New Yorker: surviving two potentially fatal brain aneurysms during Game of Thrones' early years. She has now become a leading advocate for neurologic rehabilitation, and in April 2020 she was honored with the Public Leadership in Neurology Award from the American Brain Foundation, the philanthropic partner of the American Academy of Neurology whose purpose is to promote and invest in research across the spectrum of brain disorders. "I hope that people will find themselves more able to admit to having sustained a brain injury," Clarke says. "A stigma is still attached to it, and this must change."

Clarke's first aneurysm occurred in February 2011. She had just finished filming the first season of Game of Thrones and was feeling vulnerable and stressed by the responsibility of shouldering a big role in an attention-getting new TV series. Exercise helped her cope. But on that morning in a London gym, she experienced a headache so intense she could barely put on her sneakers. "I felt as though an elastic band were squeezing my brain," Clarke recalled in her essay. She made it through a couple of exercises before practically crawling back to the locker room, where she vomited as the stabbing pain in her head worsened.

What followed was a blur: a siren, an ambulance, jumbled voices, a brain MRI. And then a diagnosis: She'd had a subarachnoid hemorrhage, a type of stroke generally caused when an aneurysm—a balloon-like bulge in an artery—ruptures and spills blood into the space surrounding the brain.

"Subarachnoid hemorrhages are not a common cause of stroke—they account for an estimated 5 percent—but they are considered the most severe kind, with the highest fatality rate," says Vivien Lee, MD, FAAN, medical director of the Comprehensive Stroke Center at the Ohio State University Wexner Medical Center in Columbus. "Ten percent of people don't survive the trip to the hospital. Of those who do, another 25 percent die in the first 24 hours."

Clarke underwent a three-hour emergency procedure in which a catheter was inserted in her groin and snaked from her femoral artery to her brain, where a wire encased in the catheter released tiny platinum coils, which induced a blood clot that sealed off the aneurysm. Two weeks after the surgery, Clarke found she couldn't remember her name and spoke gibberish when she tried to talk—a common stroke-related language impairment called aphasia. Her dreams for an acting life seemed to be shattering. "In my worst moments, I wanted to pull the plug," she wrote in the New Yorker. "I asked the medical staff to let me die."

Fortunately, the aphasia passed after a week in the intensive care unit (ICU). (The weeks after such surgery carry a high risk of complications that can result in long-term disability.) Clarke could speak again and remember her name. She made plans to begin filming Thrones' second season in a matter of weeks. In total, she spent a month in the hospital. Yet she wasn't out of the woods. Doctors had detected a second, smaller aneurysm on the other side of her brain. It hadn't yet ruptured—and might never. Or it could rupture at any time.

For Clarke, the second season of Thrones was filled with anxiety, terrible exhaustion, and head pain severe enough to require morphine. "If I am truly being honest, every minute of every day I thought I was going to die," Clarke wrote. The uncertainty eased somewhat by season 3, and after filming was complete for that season, Clarke flew to New York to play Holly Golightly in a Broadway adaptation of Breakfast at Tiffany's. When Broadway.com asked in an interview what she liked about the Golightly character, Clarke replied, "She's a survivor."

While in New York City in the spring of 2013, Clarke went for one of the periodic brain scans that monitored her unruptured aneurysm. As long as it hadn't enlarged or otherwise changed enough to cause concern, doctors would not operate. But the bulge had doubled in size, so doctors recommended treating it right away rather than risking another burst. Her second minimally invasive catheter procedure was expected to go more smoothly than the first. Instead, she developed a massive brain bleed that required a different kind of emergency operation in order for her to survive: going through her skull to reach the aneurysm and stanch the bleeding. One of the complications of endovascular coiling is a perforation of the aneurysm, which occurs in 3.6 to 11.47 percent of cases, according to a 2017 study in the Journal of Cerebrovascular and Endovascular Neurosurgery.

Clarke came out of the surgery with a drain in her head, titanium substituted for bits of her skull, and a scalp-to-ear scar. "I looked as though I had been through a war more gruesome than any that Daenerys experienced," as she described it in the New Yorker. Even more daunting, she had to endure another monthlong hospitalization with the same high risk of complications.

Post-surgery, Clarke's head pain was excruciating, worse than it had been after her first aneurysm. She had panic attacks and worried constantly that she would sustain cognitive or sensory problems, such as not being able to concentrate, remember things, or see clearly. She recalls losing all hope and feeling like a shell of herself. At Comic-Con in July 2013, a couple of months after the second surgery, Clarke's anxiety swelled into fear that she was going to die. She also experienced a horrific headache just as she was about to do a Comic-Con Q&A session with several thousand fans. But she pushed through that event and a subsequent MTV interview.

As the months passed, Clarke began to feel better physically and mentally. In addition to Game of Thrones, she has co-starred in several high-profile movies, including Terminator Genisys, Solo: A Star Wars Story, Last Christmas, and Me Before You. Today, Clarke says, "I am at 100 percent."

While resuming her activities, Clarke has been mindful of the patients with brain injury she has encountered who were worse off than she was. Some never made it out of the ICU. Others were left with lifelong neurologic impairments. "She's very lucky," Dr. Lee says. "She probably did well because she had her youth going for her, and she's relatively healthy, which made her resilient. But that's a lot to go through."

Supporting others

Clarke searched for ways to express her gratitude. "My first idea was to buy the hospital a comfy sofa," she says, thinking about all the time her parents and brother had spent with her during her first hospitalization.

Her vision broadened as she and her mother, a tech company executive, considered a relatively overlooked part of having an aneurysm burst: living after one. "I felt that if I was among the fortunate few to recover without any lasting cognitive or physical deficits, I needed to increase awareness of the lack of resources to help people get back to a purposeful and fulfilling life," Clarke says. "I want them to get back to a life that they truly recognize as being their own, not simply an identity that would forever be defined by their brain injury."

In March 2019, with guidance from the United Kingdom's Stroke Association, Clarke launched a charity called SameYou, a name that speaks to a brain injury survivor's core identity. "Regardless of the deficits you are left with, you just want to be treated as though you were the same as before," she says. Sometimes it's impossible for people to be the same. "But what is absolutely possible is that people can be helped to feel like they have the same value as they did before," she says.

SameYou's goals are to promote awareness of what's needed to recover, especially for young people; to show how investing in neurorehabilitation pays off; to advance nursing education to provide better services; and to fund clinical research.

"A lot of resources have gone into allowing patients with subarachnoid hemorrhage to survive, and we've made tremendous headway on the inpatient side," says Melissa Motta, MD, MPH, assistant professor of neurology and the program in trauma at the University of Maryland School of Medicine in Baltimore. "But when they do survive and have cognitive dysfunction and disability, they need help in learning to cope and live normal, good lives. That part hasn't been figured out as well."

SameYou has raised enough money to grant $1 million to the Spaulding Rehabilitation Network in Boston for research into the biopsychosocial impact of brain injury (which considers the interaction of physical, psychological, and social factors) and resilience in recovery and healing. The charity also funded the creation of a master's-level program at the United Kingdom's Royal College of Nursing Foundation that focuses on the cognitive, physical, and psychological aspects of rehabilitation.

"It's incredible to have such a well-known figure bringing awareness and doing public advocacy for these issues," says Sarah Song, MD, MPH, FAAN, associate professor of neurology at Rush University Medical Center in Chicago. "She's taken something that might seem academic, foreign, and remote to most people and made it personal. She's very brave, and her impact is unquestionably positive."

Sharing her story helps people normalize their own experiences, says Clarke. "Hearing survivors talk about it openly makes others feel inspired to keep going through their own difficult and painful recovery journeys. I consider it a great honor to have this connection."

Brain aneurysm 101

Most brain aneurysms don't cause problems and can remain untreated. Once an aneurysm—a bulge or ballooning in a blood vessel—has been identified, the decision to intervene depends on several risk factors, including the patient's age and the aneurysm's size and location. If the aneurysm leaks or ruptures, it causes a hemorrhagic stroke, or bleeding in the brain. An aneurysm in the area between the brain and the thin tissue covering the brain is known as a subarachnoid hemorrhage, which is what Game of Thrones actor Emilia Clarke sustained in 2011.

An aneurysm can happen at any age, to men or women. But they are more common in women, especially around menopause. Falling estrogen levels may account for this, although another theory is that women's smaller-diameter (compared with men's) blood vessels create more pressure at branch points in arteries, where aneurysms often occur.

In both sexes, smoking and high blood pressure are risk factors because they strain arteries. Family history also increases the risk of brain aneurysm. (Jenny Clarke, Emilia's mother, has also been diagnosed with aneurysms.) Less common risk factors include inherited conditions such as connective tissue disorders, polycystic kidney disease, and blood vessel malformations. "But some people develop aneurysms and we don't really know why," says Sarah Song, MD, MPH, FAAN, associate professor of neurology at Rush University Medical Center in Chicago.

People often develop aneurysms without knowing it. "About 6 million Americans have one, but only about 25,000 of those rupture each year," says Robert D. Brown Jr., MD, MPH, FAAN, professor of neurology and chair of the division of stroke and cerebrovascular disease at the Mayo Clinic College of Medicine in Rochester, MN. Unruptured aneurysms generally trigger no symptoms. "Most are detected by CT or MRI scans that are done for unrelated reasons," Dr. Brown says.

When an unruptured aneurysm is discovered, doctors take an individualized approach, considering the aneurysm location, size, and other characteristics, and many patient factors, to determine the best way to manage it. For a small aneurysm, doctors may take a wait-and-see approach, monitoring its appearance regularly via MRI or CT scans. If the aneurysm enlarges over time, doctors may recommend endovascular treatment (snaking a wire through a catheter in the groin into the artery that contains the aneurysm) or surgery.

Some cases may be treated using a catheter to deliver a flow diverter stent to the site of the aneurysm. "Aneurysms grow in part by fluid forces, and a diverter makes the force of blood go more up the main artery so there's less chance the aneurysm will expand," says Randolph S. Marshall, MD, FAAN, chief of stroke and cerebrovascular diseases at Columbia University Irving Medical Center in New York City.

Some aneurysms develop a tiny leak called a sentinel bleed that may cause transient headaches days or weeks before a rupture. But most of the time, the first sign of a rupture is a sudden, horrendous headache. "It's unlike anything you've ever experienced before," Dr. Brown says. "Patients describe it as a feeling of being hit over the head with a baseball bat." Nausea, vomiting, and blurred vision are other typical symptoms, as are seizures, other vision disturbances, and loss of consciousness.

Blood spilling from a ruptured aneurysm into the subarachnoid space—around the brain—creates pressure. "The problem is that the brain is encased by the skull, so the brain gets squished," says Vivien Lee, MD, FAAN, medical director of the Comprehensive Stroke Center at the Ohio State University Wexner Medical Center in Columbus. The initial bleed may stop spontaneously or because of clotting and allow time for treatment. But risk of a potentially fatal rebleed is high. "It's extremely important to treat a rupture in the first hours to days," Dr. Marshall says.

The most common treatment, according to Dr. Brown, is endovascular coil embolization—the procedure Clarke had in 2011 after her first aneurysm—which involves a catheter delivering tiny metal spirals into the aneurysm to reduce blood flow and form a blood clot that seals it off. If coiling isn't safe or appropriate, a patient might undergo some other endovascular treatment, or a more invasive procedure called microvascular clipping, which entails placing a small clip at the stem of the aneurysm to pinch off its blood supply.

Life after aneurysm surgery

As Emilia Clarke's experience shows, dangers remain even after successful surgery for a ruptured aneurysm. "One big worry is vasospasm, which may occur when arteries are extremely irritated by blood and pressure in the subarachnoid space, and they tighten and become smaller," says Vivien Lee, MD, FAAN, medical director of the Comprehensive Stroke Center at the Ohio State University Wexner Medical Center. "This puts the patient at risk of the other type of stroke—ischemic stroke." Reduced blood flow through narrowed arteries due to ischemic stroke may cause neurologic problems.

"If you're lucky enough to have minimal physical disability, there's still a hill to climb with cognitive impairments," says Melissa Motta, MD, MPH, assistant professor of neurology at the University of Maryland School of Medicine. "It's common to have problems with memory, mood, anxiety, thinking, and sleep." The pain and fatigue Clarke felt are common as well. "Fatigue is under-recognized," Dr. Motta says. "I didn't think much about fatigue before I started our neurorecovery clinic, but it's by far the most common symptom patients report, even months after discharge."

Rehabilitation varies by patient but often involves three forms of therapy. Physical therapy helps people build strength after a long hospitalization and improve ambulatory skills like balance and walking. Occupational therapy targets complex motor skills needed for everyday activities, such as holding a toothbrush or buttoning a shirt. Speech therapy works on language skills, while cognitive rehabilitation addresses memory and other executive functioning problems.

"People are often ashamed to say they don't feel like themselves when everyone is saying, 'You're so lucky to be alive,'" says Sarah Song, MD, MPH, FAAN, associate professor of neurology at Rush University Medical Center in Chicago. "But quality of life is about more than just whether you survive. The fact that Emilia Clarke did so well is amazing. But it's not always the case."

Virtual rehabilitation during COVID

During the coronavirus pandemic, many survivors of brain injury have been discharged from hospitals earlier than they might have been normally. The pandemic has also restricted in-person rehabilitation visits. To work around these limitations, actor Emilia Clarke, through her charity, SameYou, has helped provide stroke and brain injury rehabilitation services at home via telehealth.

In the United States, SameYou has partnered with the Spaulding Rehabilitation Network in the Boston area to launch PAVING the Path to Wellness: Emergency Response Edition, a six-week online program that's free for people with low or no income. Adapted from a regularly offered Spaulding course, the Zoom-based program focuses on improving diet, sleep, and exercise habits and forming strong social connections to support recovery from brain injury or stroke.

In Clarke's native United Kingdom, SameYou is facilitating virtual medical services in conjunction with London's National Hospital for Neurology and Neurosurgery, Queen Square, and the University College London Centre for Neurorehabilitation. Their initiative, known as the Neurorehabilitation Online Project, uses Zoom and WhatsApp for patients to receive physiotherapy, occupational therapy, speech and language therapy, cognitive strategies, fatigue management, and emotional support—in group and one-on-one sessions.

"It was clear from the onset that we were reaching and connecting with people who were very isolated and hurting during this time," says Beth Frates, MD, a lifestyle medicine specialist and wellness coach at Spaulding. "There were lots of tears," she says. "Some were from distress and sorrow, but many more from joy and liberation at finally being heard, valued, and understood."