Jan. 30, 2017 -- Meghan Scheiber was in the middle of a 60-hour workweek when the call came: her 2-year-old son was sick at day care and needed to be taken home.
Buried in work and deadlines at her medical billing job, Scheiber was already feeling stressed. As she worried about how to juggle everything, she suddenly felt like she was going to pass out and had a heavy feeling in her chest and arms. She chalked it up to an anxiety attack or the start of the flu, let her husband pick up their son, and finished her workday before driving home.
But when the heavy feeling came back the next day at home, Scheiber, then 33, knew she had to act. “I said to my husband, ‘We have to go to the ER.’”
By the time she got there, she was in the middle of a heart attack. She was admitted to the intensive care unit and had a second heart attack 2 days later.
Doctors diagnosed Scheiber with a type of heart attack often found in younger women. It’s called spontaneous coronary artery dissection, or SCAD.
“I asked my doctor if I would die,” she recalls tearfully 6 years later, “and he said he didn’t know what would happen.”
What is SCAD?
Unlike a more typical heart attack caused by a buildup of plaque in the arteries, a SCAD heart attack starts with a tear in an artery. The tear blocks the artery and blood flow to the heart, leading to a heart attack. (See this animation from the Mayo Clinic.)
Although SCAD causes a small percentage of heart attacks overall, it’s responsible for 40% of heart attacks in women under the age of 50. And it’s mostly happening to young women -- more than 90% of SCAD patients are female.
“This is an important cause of heart attacks among younger people, and it has really only been in the past 4 or 5 years that our thinking on it has changed. For the past 100 years, we had been missing it,” says Sharonne N. Hayes, MD, of the Mayo Clinic in Minnesota, one of the world’s most renowned SCAD researchers.
People with SCAD generally are healthy and don’t have typical heart attack risk factors like smoking, diabetes, or being overweight. SCAD is often misdiagnosed and may lead to treatment that can cause more artery damage.
“SCAD is happening to a group of women who appear healthy, are thin, and have no risk factors. So even though they have classic heart attack symptoms, they are often being misdiagnosed,” Hayes says. Many SCAD patients are even sent home from hospitals in the middle of a heart attack that isn’t discovered for days.
Heart attacks are typically diagnosed with blood work and a test called an electrocardiogram, but SCAD can only be diagnosed with an angiogram (an X-ray that takes pictures of blood flow in the artery).
Ellen Robin was 53 when it happened to her. “It felt like an elephant sat on my chest,” she recalls. “I wobbled and grabbed onto a folding chair because it almost knocked me off my feet. I felt dizzy, both arms were going numb, and I thought, what the heck is this?”
Who Is at Risk?
While SCAD patients range from their teens to their 80s, the average patient is 42 years old.
About 10%-15% of cases happen around childbirth. Researchers haven’t been able to pinpoint a specific gender or hormonal explanation. But they know the physical strain of childbirth isn’t the main cause since SCAD happens with both C-sections and vaginal deliveries.
It does appear to be associated with other artery problems, most commonly fibromuscular dysplasia (FMD). This disease causes cells to grow abnormally in artery walls and is seen in at least half of SCAD patients.
Heather Gornik, MD, a cardiologist and vascular medicine specialist at the Cleveland Clinic, says patients often don’t know they even have the disease until doctors look for artery abnormalities after a heart attack. “So it is now recommended that all SCAD patients be checked for FMD and other artery problems such as brain aneurysms or blockages or dissections or tears in other vessels,” she explains.
SCAD can also run in families, although Hayes says researchers haven’t cracked the genetic connection. Her research team is collecting DNA samples from patients and sometimes sees the condition present among mothers, daughters, aunts, nieces, and sisters.
But in many patients, like Scheiber, the cause remains uncertain.
“Mine wasn’t related to pregnancy. I have no connective tissue disorders,” she says. “Unfortunately there are a lot of us like that. You don’t know why it happened, so there is a fear of the unknown, but I try to live in the moment.”
Doctors don’t know how to prevent SCAD and often give patients personalized recommendations. But given its high chance of happening again, patients are generally told to take a daily aspirin. They are also asked to avoid:
- Getting pregnant
- Taking hormone therapy
- High-intensity or high-impact sports
- Heavy lifting that causes strain, like body building or shoveling snow
Scheiber’s two attacks caused damage to the bottom of her heart, but 6 years later she is symptom-free and hasn’t had another attack. She does exercise regularly and eat well for general heart health, and she says as a result she is in better shape at the age of 39 than she was a decade ago. “My plan is to be 40 and fabulous,” she says.
Latest SCAD Research
As recently as 2009, Hayes thought SCAD was too rare to study. But then she met a patient who told her an online SCAD community had grown to 70 female participants. Hayes connected with them and started a pilot study that has since enrolled more than 700 women and men into a SCAD registry. That’s led to several discoveries about this condition. They include:
Survival rates are much better than originally thought. Doctors used to view SCAD as often fatal. But the death rate is actually very low, ranging between 1% and 5%. Outcomes are better than for people with regular heart attacks. But chances for a repeat SCAD attack are greater, happening in more than 20% of cases.
Standard heart attack treatment isn't best. Regular heart attack patients often receive stents implanted to open their blocked arteries. But stents can make things worse for SCAD patients, since they have tears in arteries.
“With SCAD, the artery that’s dissected or torn is very fragile and procedures can extend the tear,” Gornik says.
Doctors often treat SCAD patients with a combination of aspirin and an anti-platelet medication, watch them closely for early complications, and have them do rehab. Patients are given emotional support and education about heart health and exercise. Most patients get better in a matter of weeks, although depending on how quickly they were diagnosed, there may be lingering heart damage.
There are triggers . Patients often report extreme emotional or physical stress in the days before a SCAD, like a death in the family, breakdown in marriage, job stress, or intense physical exercise -- even lifting heavy items.
Helping SCAD Patients
Hayes is helping to write the first scientific statement about SCAD for the American Heart Association in the hopes of improving diagnosis rates and standardizing treatment. It’s set to be released this year.
She says the best advice for women is to call 911 if they think they are having a heart attack. Young women who don’t have risk factors and are having trouble getting a diagnosis should ask about SCAD.
- Chest pain or discomfort
- Shortness of breath
- Pain in arms, back, neck, or jaw
- Nausea, lightheadedness, and sweating
There are now very active online support groups pushing SCAD research and helping survivors connect. Robin is an administrator of a private Facebook group that has grown to more than 1,500 members in 5 years.
“Every day I add another one or two survivors to our group. We just keep growing,” Robin says.
She hasn’t had another SCAD attack, but she admits to being depressed and anxious that one would happen for the first few years after her diagnosis. She says time and connecting with other survivors have helped ease those fears and inspired her to reassure others who are newly diagnosed.
“I promise them it will get better and easier. I want them to know they aren’t alone. We are working on finding answers, and we will have an answer someday because we will never give up.”