Cecile and Caroline were diagnosed with SCAD, a rare heart condition

Cecile and Caroline were diagnosed with SCAD, a rare heart condition
Cecile and Caroline were diagnosed with SCAD, a rare heart condition

The most common cause of a heart attack is arteriosclerosis. A blood clot can cause a blockage in an artery, causing the blood flow to stop, resulting in a heart attack. Cardiologist Suzette Elias-Smale works at Radboud UMC and has the necessary knowledge. “The risk factors for arteriosclerosis are smoking, high blood pressure, high cholesterol, diabetes, but also being overweight,” she says.

“These are classic risk factors for arteriosclerosis, and therefore also for a classic heart attack. There is a completely different cause for a SCAD. Something happens suddenly to the wall of the vessel that causes people to have a heart attack. It is relatively rare, which is why it is not well known,” she continues.

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When Verhage knows what happened to her, she starts investigating. “I could find very little information. Then I founded www.vrouwenhart.nl.” On the website she collects all the information she can find to make women aware of the symptoms and consequences of the heart condition. She also starts the Facebook group Woman’s heart and a foundation. During that period she met Cecile de Wissel (56). De Wissel will also receive a SCAD in 2010 and also needs more information. De Wissel is now a member of the foundation’s board.

“At the beginning of August 2010 I wasn’t feeling well,” says De Wissel. “After four days I felt it again. It never went away, the feeling that you are going to faint, feel nauseous or have to throw up. And that sensation on your chest that radiates to your jaw. When a woman comes to a doctor with these complaints, the doctor does not always realize that it is a heart attack. My husband called an ambulance, they immediately made an ECG. ‘Yes, wrong. Anterior wall infarction,’ I heard them say.”


The condition is more common in women than in men. “The average age of women who develop a SCAD is between 45 and 52 years. That’s relatively young for a heart attack. The ratio of patients who have a SCAD is 90 percent female, 10 percent male,” says cardiologist Elias-Smale. “That is a very skewed distribution and that is why we think it may be related to female hormones, also because it sometimes occurs during pregnancies.”

“These hormones can be natural, but can also be found in contraception. That is probably one of the reasons why women are more susceptible to SCAD than men. And certainly also younger women. In addition, fibromuscular dysplasia, a connective tissue disease that affects the vascular wall, is a known risk factor. A healthy lifestyle in itself does not guarantee that you are not at risk of a SCAD.”


Because there is a chance that a SCAD will reoccur, doctors often provide lifestyle advice to reduce the risk. “It is better not to use contraception in the form of the pill, because hormones then pass through the entire body. Use an IUD, which releases hormones much more locally. In addition, we often say that women should not exercise too intensively, do not go to the extreme in endurance sports or strength training. This way you prevent excessive pressure on blood vessels.”

Elias-Smale emphasizes that this involves intensive forms of sport, “don’t just sit on the couch.” And: “In addition, it is better not to use hormones during menopause to reduce menopausal symptoms.” According to Elias-Smale, research into SCAD is currently underway. But it is complicated: “It is quite rare, which makes it difficult to collect sufficient research data.” That is why SCAD research is now being conducted at European level.

Woman’s heart

The two women are now doing well, they have a check-up in the hospital once in a while. “But at a certain point it didn’t add much anymore and then I stopped,” says De Wissel. “Later, the GP took over the basic check-up and that gives us a good feeling.”

Verhage and De Wissel want to create more awareness with the website, Facebook groups and social media. “I have a dark suspicion that there are still many people who are turned away from their GP because it is not recognized in their environment,” says Verhage. “Complaints such as extreme fatigue, the feeling of a bra band that is too tight, pain between the shoulder blades, cramps in the jaws. These symptoms can all indicate SCAD.”

“We operate the site and Facebook group purely on a voluntary basis,” she continues. “We are all heart patients. You wouldn’t wish what we went through on anyone. That is why a lot of knowledge needs to be shared. Women must be made alert and not simply let themselves be sent away from the doctor with an antacid. It can have very dire consequences.”

“I would say, follow your intuition when you go to the doctor,” De Wissel adds. “Tell your story clearly, including all complaints. And let us know if you don’t trust it. Ask whether the doctor is aware of the male-female differences and whether you can be referred differently. Then research can be conducted in time and perhaps unpleasant situations can be prevented.”

Cecile de Wissel (left) and Caroline Verhage.

Cecile de Wissel and Caroline Verhage

Thumbnail for 'The Battle for the Women's Heart' shows: more medical research into the women's heart is vital‘The Battle for the Women’s Heart’ shows: more medical research into the women’s heart is vitalAlso read

The article is in Dutch

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