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Reaching the New Normal

Stacie Moore and Bethanne Harris might not seem like typical stroke victims—but their stories are a reminder that strokes can happen to anyone. Moore had a stroke in 2004, and Harris’s most recent stroke was in 2023, but despite a nearly 20-year gap, their stories start the same way. They were both young moms in great shape with no cardiovascular risk factors. Then, they had strokes.

Cardiovascular health issues might’ve been happening before Moore had her stroke—but when she noticed symptoms, doctors didn’t take them seriously. When she explained that she was sporadically experiencing headaches, struggles with memory and blurred vision, she was told they were the result of stress and referred to psychiatrists. Then, when she was in the shower one morning, her left arm stopped working.

Moore’s daughter, 9 years old at the time, called paramedics. But when they arrived, they took Moore’s symptoms—loss of feeling in her left arm and high blood pressure—as signs of drug use (although she denied that multiple times), rather than recognizing them as a stroke.

After five hours at the hospital, her husband noticed her face drooping, and then the entire left side of her body lost feeling. That’s when Moore was finally taken in for an MRI, which determined that she was having a stroke. Because it took so long for her stroke to be properly identified, she missed the window during which a medication can be administered that can break up a blood clot and stop a stroke. For Moore, that resulted in a lack of treatment options, an increased fear of a worse outcome, and a level of permanent damage that might’ve been avoidable.

“The only option I had was to go into the ICU and hope that I didn’t bleed out of my brain during the night,” Moore remembers.

Harris’s story also begins with symptoms going unrecognized. At work one day, she lost her ability to see and struggled with basic cognition—like understanding what others were saying to her—and once she got home, she began to throw up uncontrollably. She went to a hospital but was discharged with a general headache diagnosis.

The next morning, when her symptoms hadn’t improved, Harris went back to a hospital hoping for answers. That’s when her stroke was finally identified, and she was transported to another hospital for emergency surgery. Unfortunately, that wasn’t the end of her health challenges, nor was it her last time struggling to receive the proper care.

Three years later, Harris suffered similar symptoms—and again left the hospital without a stroke diagnosis. “I told them that I lost feeling in my hand and had a history of stroke, and the nurse actually told me that they didn’t know how seriously they should take me,” Harris says.

But she should’ve been taken seriously; she was having a stroke. In the hospital, doctors misinterpreted Harris’s CT scan and sent her home without identifying or treating the stroke. Later, they realized their mistake and called Harris to let her know she needed to return to an emergency room, one that was capable of handling neurosurgery needs. She went and received care, but that care could’ve been given hours earlier had doctors evaluated her more thoroughly.

For both Moore and Harris, as women and young stroke survivors, self-advocacy has been crucial. After their strokes weren’t initially treated with urgency, their recovery processes involved follow-up testing, medications to manage cardiovascular conditions, and therapy to regain physical and cognitive function. Every step of the way, both survivors had to learn to trust themselves when something didn’t feel right and seek care that made them feel heard.

Today, Moore and Harris each use their experiences to connect with others—especially young women who are stroke survivors—and to support a future where patients don’t have to face obstacles to care.

Understanding Underlying Conditions

After Harris’s first stroke in 2020, doctors knew how it happened: a carotid artery dissection. That means that a carotid artery, a vessel that supplies blood to the brain, tore. But because Harris fit the bill as a young person without other risk factors, providers assumed that the dissection was just bad luck from working out or some injury she might’ve sustained but couldn’t pinpoint.

“Dissections are probably one of the most common causes of stroke in young people,” explains Dr. Karan Ravishankar, a vascular neurologist at Main Line Health. According to Ravishankar, that’s because dissections are often the result of traumatic injuries like car accidents, so they can lead to strokes in people with no underlying conditions.

Because her stroke was interpreted as a freak accident that was unlikely to recur, Harris was quickly cleared to return to a normal routine. But three years later, she had two more dissections—which not only jeopardized her health, but also increased her confusion and emotional distress.

“Someone who works out is not supposed to tear their arteries,” Harris says. “At the time, I felt like I somehow did this to myself, like I was causing me to miss time with my family and daughter.”

It wasn’t until after the second set of dissections that Harris got clarity. Through follow-up testing, she learned that she has a vascular collagen disorder and a gene that’s connected to the tangling of blood vessels—which, according to the National Institute of Neurological Disorders and Stroke, occurs when blood vessels form abnormally and cause issues with the connections between arteries and veins.

Though the specifics of the gene Harris has aren’t known yet, doctors think it’s significant in stroke risk. While Harris was relieved to finally identify this chronic condition, her second recovery process has been more draining than the first, both physically and mentally.

“I have a lot of restrictions,” Harris says. One of the most challenging of those restrictions is that she isn’t yet cleared to lift her daughter, who’s now 5 years old. As a mother, that’s an emotionally complicated process. But living through it has inspired Harris to have more open conversations with her daughter about her health.   

“Don’t be a spectator to your medical journey. If you have a bad doctor’s appointment, you can find someone better,” she says. “It can be so frustrating, but to have the best quality of life for you, you have to keep pushing.”

Maximizing Recovery Treatments

According to Ravishankar, keeping active and engaging in mental and physical rehab is especially important during the first year after the stroke because that’s when most progress can be made. But that relatively universal timeline doesn’t mean that all recovery processes are created equal: Every survivor’s therapy needs might be different.

“For all patients, the general healing process means they’ll get some function back,” Ravishankar says. “The degree of improvement is the question, and we won’t be able to say for sure in the beginning, but after about a year, where the patient is, that’s about where we expect them to be lifelong.”

For Moore, gaining back as much function as she could was a top priority. She had initially been told her stroke was caused by high blood pressure, a side effect of the birth control she was taking. But with testing, she learned that she has a hypercoagulation disorder. This condition predisposes her to blood clots and therefore increases her stroke risk.

That diagnosis necessitated lifestyle adjustments to manage her disorder, but she didn’t want that additional concern to stop her from achieving as much physical and mental agility as she could. As she went through occupational therapy, Moore realized that if she wanted to maximize her treatment, she’d have to take the initiative.

Early in her recovery, one physical therapist she saw suggested that she could stop therapy after a few sessions, because she had enough function for things like walking up and down stairs and dressing herself in the morning.

“I said: ‘Well, what if I want to run?’” Moore says. “I wanted to be able to play with my kids on the playground and get back into a car and drive. I had to find my voice to stand up for myself and say that it wasn’t enough therapy.”

The trouble is this: For the additional therapy Moore needed to regain the most function possible, she had to pay out-of-pocket because her insurance wouldn’t cover that additional therapy. Though it’s fortunate she was able to do so, other patients may not be able to maximize their recovery because they don’t have the financial means to take that approach.

That inequality highlights just how many barriers to care patients face, making advocacy work that much more important.

Finding Community

Moore and Harris have relied on help from their families, friends, coworkers and communities throughout their recoveries. Now, they’re paying it forward.

After her stroke, Moore volunteered at the hospital where she was treated, working with the patient advocacy committee and with stroke survivors. Because she could relate to young stroke survivors in particular—who can often feel like they are in the minority—she acted as a resource for advice, support and a listening ear. One patient she spent time with was a 19-year-old girl who had suffered a stroke and was facing intense challenges both in trying to heal and in trying to understand why this had happened to her.

“I visited her almost every day. I told her that what helped me was focusing on small goals,” Moore says. For the patient, one of those goals was to drink a latte once she was able to swallow on her own. When that day came, Moore brought her a latte and they celebrated that win together.

“If there’s an opportunity to share my experience with someone and help them, that’s worth it to me,” she says.

Harris has also sought out mutually supportive relationships. Speaking engagements that she’s participated in have opened a lot of space for her to meet and connect with other survivors. She’s also involved with Go Red for Women and with Caesars Entertainment’s National Board for Awareness of Visible and Invisible Disabilities. Those experiences have helped her find strength in vulnerability and inspired her to champion others.

“Helping the local community has really been my biggest focus,” Harris says. And her efforts are making a difference. Through the American Heart Association, she’s worked with a community library in Chester, PA, to provide blood pressure monitors to residents who have a need for them but don’t have the resources to purchase their own. Residents can borrow them the way they would a library book, and monthly, professionals come in to educate individuals on using the blood pressure cuffs.

“A resource that’s sustainable and can help the community long-term being at the library, which is already a local fixture, is really important,” she says.

For your health, self-advocacy is both a preventative measure and a way to ensure you’re receiving the best care after a stroke or other medical event. While the AHA strives to create a more equitable future where the onus isn’t on patients to take charge of their care, stories like Moore’s and Harris’s shine a light on the inspiration and wisdom that survivors can pass down.

Bethanne Harris and family.