April 16, 2024 — Toniya Farmer was driving on an Atlanta interstate when severe chest pains started. She called 911, had pain and difficulty breathing and believed she was in imminent danger.
When she made it to a local emergency room, she said that she was having a heart attack. Yet none of the hospital staff responded until a man in the waiting room asked aloud if anyone had heard her.
“I guess that I looked too young to be having a heart attack,” said Farmer.
Her story highlights the larger issue of gender differences in the diagnosis and treatment of cardiac disease. Findings from the 2014-2020 National Hospital Ambulatory Medical Care Survey showed that U.S. women visiting emergency departments wait 29% longer, on average, to be seen and evaluated for heart attacks than men.
These delays can be life-threatening, especially for younger women who are at risk for spontaneous coronary artery dissection (SCAD), a type of heart attack that accounts for as many as 1 in 3 acute heart events in women under age 50.
“There are still biases that heart attack patients just look like older, white males,” said Erin Michos, MD, director of Women’s Cardiovascular Health and associate director of preventive cardiology at the Johns Hopkins Ciccarone Center for the Prevention of Cardiovascular Disease in Baltimore. “SCAD patients don’t have the risk factors that we think about for heart attacks; they have normal cholesterol, normal blood pressure, tend to be healthy-appearing, exercise regularly, and eat healthy diets.”
Getting to the Heart of SCAD
Unlike most heart attacks (which result from the buildup of plaque or formation of blood clots in the arteries), SCAD results from a tear in the middle layer of the artery walls where blood begins to pool, causing the layers of the wall to separate. This eventually restricts blood flow. The average patient is premenopausal and between 44 and 53 years old, but SCAD also accounts for anywhere from 15% to 43% of heart attacks in women who have recently given birth.
Researchers believe that SCAD may be related to hormones and their influence on connective tissues, pre-existing connective tissue disorders like Ehlers-Danlos syndrome, or abnormal cell growth in the artery walls (fibromuscular dysplasia) that causes arteries to bulge.
Another theory is immense emotional or physical stress.
“In about 50% of cases, we see extreme emotional stress and in about 20% to 30%, very intensive exercise,” said Michos. “We’ve hypothesized that these stressors rev up the sympathetic nervous system, blood pressure, and heart rate increase, and you have this adrenaline surge; that might be the thing that initiates the event if the artery is already fragile or prone to tear,” she said.
Faces of SCAD
The lack of answers and information about SCAD have significant effects on women who experience them.
“The frustration that these patients have is real,” said Sharonne Hayes MD, founder of the Women’s Heart Clinic at Mayo Clinic in Rochester, MN. “They’re not getting answers. They worry that they are going to die, about having another SCAD,” she said.
Nakeia Jackson is a traveling nurse who lives in Alton, IL. She had her first SCAD when she was 28. Now 34, Jackson said that she doesn’t trust small community hospitals to do the right thing. “They don’t know how to treat them,” she said.
After 24 hours of stabbing chest pain and no answers, she headed straight to Barnes Hospital in St. Louis and the doctors who would save her life.
“I was blindsided,” said Jennifer Maxwell from Cedar Rapids, IA. She had her first of three SCADs at the age of 40. Now 55, Maxwell said that she had been training for a marathon outdoors in the cold Iowa winter when she awoke one day with tightness and pressure in her chest and shortness of breath, and she headed to a local hospital.
“The hospital didn’t take it seriously” she said. “They didn’t put monitors on me, did not call a cardiologist, did not do an EKG,” she said. “I felt unheard,” she said. “The attending physician told me that I was 40 years old and healthy, and that it was just anxiety.”
SCAD Sisterhood
SCAD leaves indelible marks. Initial treatments range from watchful waiting to medication management plus advice to avoid highly rigorous activity and heavy lifting, all of which are intended to bypass potential triggers. But the evidence supporting these treatments is spotty and somewhat weak. “We’re guided by incremental evidence. We have had some great breakthroughs but we’re not there yet,” said Hayes.
Doctors are also unable to predict which women will have repeat events, a dilemma that leaves many women with mental health issues as they navigate the aftermath. “It’s understandable; they were young and did everything right and then this bad thing happened to them,” said Michos. “They live with anxiety, but too much anxiety might make things worse, so part of my counseling is to encourage patients to get help for stress and anxiety.”
The dearth of evidence and sound medical treatments have bound many of these women together, well beyond clinic and emergency room walls. Connecting with others with similar experiences has made significant differences in their lives.
“I feel empowered,” said JoAnn Girardo, a 61 year-old SCAD survivor. She attributed a lot of her success to an organization called WomenHeart, where she found invaluable resources that eventually prompted her to volunteer as a “champion,” a group of advocates and educators.
“Seeing that other women are thriving, not just surviving, is very encouraging, she said. “Others have found solace through SCAD Research, a nonprofit that raises funds to support scientific research, provides education, and hosts several groups on Facebook for survivors and their families.
When you ask these women what they wish they had known before their SCAD, their advice comes rapidly:
- Girardo: “Learn to use your words correctly and don’t minimize your situation; the doctor only knows what you are telling her.”
- Farmer: “Find a doctor that is in alignment with you. If you see a doctor that doesn’t give you the answer or doesn’t answer the questions you ask, go to another one and don’t stop until you get the answer you need.”
- Jackson: “Any symptoms that you think might possibly be a heart attack, go get checked out immediately. A lot of physicians are not familiar with SCAD, so you really have to advocate for yourself.”
- Maxwell: “You can’t assume when you talk into the ER and say you have chest discomfort that someone is going to know it’s your heart. Women present cardiac symptoms differently than men. So you need to make sure that you are fighting for yourself.”
