CNBC correspondent Sharon Epperson had no idea that a disease was sitting silently in her brain until one day she experienced a rupture which changed her life forever.
The brain aneurysm survivor now wants to bring awareness to the affliction that affects 30,000 people per year in the United States, many fatally, according to Christine Buckley, executive director of the Brain Aneurysm Foundation.
On March 27, Epperson joined the foundation and a delegation of more than 100 fellow survivors, family members, advocates and medical professionals to educate 200 lawmakers on what needs to be done to combat brain aneurysm disease.
Epperson’s trip to Capitol Hill comes at a time when brain aneurysms are at the forefront of social consciousness.
Last week, Game of Thrones actress Emilia Clarke revealed that she had two brain aneurysms that required life-saving surgery.
The disease is more common than one might think — according to the foundation, a rupture occurs every 18 minutes — and it often affects men and women during the prime of their lives.
Epperson, who exercises daily and eats a balanced diet, was 48 when she felt the worst headache of her life.
“It was Sept. 21, 2016. I was exercising as I normally do, stretching — doing a downward dog — when I immediately felt pain in my head,” she said. “My neck became very stiff and I knew I needed to leave class right away.”
She called her husband, Christopher Farley, who took her home. But the pain kept getting worse.
“Before Chris got there, I could barely make it to my car,” she recalled.
Her primary care doctor wasn’t available, and the doctor on call — who had been an emergency room doctor — urged her to go to the ER. There she received a CT scan, which showed bleeding on the brain.
Epperson, a senior personal finance correspondent for CNBC, was having a brain aneurysm.
She experienced a full recovery, in large part due to her quick and decisive decision to listen to her body and see a doctor, but outcomes such as hers are uncommon after a rupture.
Brain aneurysms kill 40 percent of the time, often instantly, according to the Brain Aneurysm Foundation. Fifteen percent never reach the hospital and about 66 percent of those who survive sustain permanent brain damage.
I learned that this journey isn’t about me, it’s about us together.
“The key thing is to realize that the classical description is the worst headache of your life, like your head is going to explode. In this time when people like to google things and ask friends, we have to remind people that time is brain,” said Dr. Carolyn Brockington, director of the stroke center at Mount Sinai St. Luke's and Mount Sinai West Hospital.
Brain aneurysms hit black women the hardest. African Americans are twice as likely as whites to be stricken, and women are more likely than men, which puts women of color at the highest risk for this potentially deadly affliction.
More than 6 million Americans are living with a brain aneurysm, a disease that sits silently and often goes undetected until a rupture occurs, according to data provided by the foundation. Despite the high fatality rate of aneurysms, the federal government spends only 83 cents per year on brain aneurysm research for each person afflicted. Meanwhile, the combined lost wages of survivors of brain aneurysm ruptures and their caretakers are approximately $138 million per year, according to the foundation's data.
Epperson's visit to Capitol Hill came in support of Ellie’s Law, a bipartisan bill introduced by Reps. Yvette Clarke, D-N.Y., and Peter King, R-N.Y., that would authorize $25 million in federal funding over five years to the National Institute of Neurological Disorders and Stroke to research this condition. The bill is named after Ellie Helton, a 14-year-old from North Carolina, who died of a brain aneurysm.
WHAT IS A BRAIN ANEURYSM?
A brain aneurysm occurs when an artery wall weakens, creating a bulge that can fill with blood. According to the American Heart Association, one in 50 people are living with an undetected brain aneurysm. If a rupture occurs, it can cause bleeding into the brain — a type of stroke called a subarachnoid hemorrhage. The first symptom is often a sudden, severe headache.
“If a focal neurological deficit occurs — that’s a fancy way of saying, an associated symptom alongside a severe headache — like double vision or paralysis on one side of the body occurs, immediate medical attention is required,” Brockington said.
CAUSES AND RISK FACTORS
Most aneurysms occur due to weakened blood vessels in the brain. Risk factors range from genetics and high blood pressure to smoking and excessive alcohol use.
They can happen at any age but most occur between the ages of 35 and 60. Clarke, the actress, was 24 when she first experienced bleeding in her brain that required emergency surgery.
Epperson likely had a family history — two or more immediate family members with brain aneurysms.
“I remember my grandfather, great grandfather and my mother’s oldest sister all had brain hemorrhages, but I’m unsure if they were brain aneurysms,” she said.
TREATMENT AND SURGERIES
“Small aneurysms, under 7mm, that produce no symptoms may not need any treatment,” Brockington says. Often, these small aneurysms are found incidentally when looking for something else, but they should be monitored regularly, she added.
The size, location and shape of the aneurysm determine whether surgery or a minimally invasive procedure is needed.
Ruptured brain aneurysms are an emergency and require immediate medical attention. Recovery may take weeks or months.
Epperson underwent surgery within six hours of her diagnosis. The surgeons performed a type of brain surgery in which they clamped the aneurysm to stop the bleeding.
“Another approach is an endovascular approach, where surgeons put coils into the neck of the ballooned artery so blood can’t get in there, collapsing the balloon,” Brockington said.
PROGNOSIS AND RECOVERY
Recovery varies based on someone’s age, general health, the location of the rupture, and how quickly they made it to the hospital for treatment. The faster someone gets to the hospital and receives appropriate treatment, the better their likelihood of a full recovery.
Almost all brain aneurysm patients spend some time in the intensive care unit to monitor for re-bleeding and vasospasm of the brain, two sequelae that can occur after a rupture.
Epperson’s recovery began with a two-week stint in the intensive care unit, followed by two weeks in a rehabilitation hospital. Her entire recovery took more than a year.
“I had to learn to walk again and went through several sessions of speech and physical therapy,” she told NBC News. “I came a long way. When I returned home, I could barely make it up the steps, but I recovered slowly with the help of my friends and family,” she added.
“I learned that this journey isn’t about me, it’s about us together.”