- Master SoulCycle instructor Emma Zaks suffered a stroke leading to double vision at age 33.
- Doctors discharged her a few times before realizing her vision and digestive issues were connected.
- It took years to find a surgeon who would correct her eye, she said on the Pregnantish podcast.
One night in 2015, Emma Zaks went to bed with stomach issues and woke up seeing double. She was 33 and teaching 18 SoulCycle classes a week. Health scares weren't on her mind.
But when she looked in the mirror, she saw her right eye pointing forward and her left eye turned outward. The only way she could see straight was by closing the wayward eye.
"It was terrifying," Zaks told host Andrea Syrtash on the Pregnantish podcast, out earlier this month.
She went to the emergency room right away, but it took two more weeks in and out of the hospital, loads of tests, and an exploratory surgery for a doctor to finally put together what was wrong: She had a rare autoimmune disease that had caused both the stomach pains and a mini-stroke, which paralyzed the nerve in her brain that controls eye movement.
Two doctors told her she'd never see straight without an eye patch again, but Zaks' persistence to keep researching and seeking more opinions led her to a successful surgery over a year later.
Now healthy, she's speaking up about her experience to encourage others to advocate for themselves in a siloed healthcare system.
Zaks was discharged twice before her condition was taken seriously
For weeks, Zaks had suffered stomach pains so severe she once had to leave mid-SoulCycle class to throw up before calling an ambulance to the ER. She underwent a colonoscopy, endoscopy, and CT scans that all came back inconclusive, she wrote for Style of Sport in 2017. She was sent home after six days.
"Knowing what I know now, I wish I had pushed harder for more answers, but who was I to question these doctors? I hate confrontation and wanted to be a 'good patient' who was liked," she wrote.
But a few months later, she woke up with the lazy eye and returned to the ER. She was discharged with steroids and no explanation. After all, a spinal tap and MRI had come back clean.
Back home, Zaks couldn't stop vomiting and went to the ER once again. This time, an exploratory surgery found an "intestine that hadn't seen oxygen in years," a doctor said, according to Zaks. Removing part of it solved the issue, but didn't answer why it had happened or what was wrong with her eye.
"I was being treated for two completely separate ailments — one gastrointestinal, one neurological," she wrote.
Eventually, a doctor put the two together and diagnosed her with granulomatosis with polyangiitis (GPA). The condition can attack blood vessels anywhere in the body. For Zaks, it constricted her intestines, hence the stomach pains, and caused swelling in the brain, hence the vision problems.
A chemotherapy drug treated the GPA, but it took about a year for her to find a neuro-ophthalmologist to surgically correct her vision. The procedure, called strabismus surgery, involves sewing the eye muscle to the wall of the eye.
"If I had just listened to the initial diagnosis and the initial prognosis, I would still be wearing an eye patch," Zaks said on Pregnantish.
Young women can be vulnerable to strokes, but are often overlooked
But clinicians can often overlook strokes in young women. Brittany Scheier, a lawyer who had a stroke a few years ago at age 27, previously told Insider about how her symptoms were brushed off in the ER as drug- or alcohol-related.
Dr. Suzanne Steinbaum, an American Heart Association Go Red for Women volunteer medical expert and cardiologist in New York City, previously told Insider it's critical for women to advocate for themselves.
"So many times I hear, 'I was listening to the doctor. Maybe they're right,'" she said. "No one knows our bodies as well as we do. Nobody is living in our bodies. We know when we're not OK."