One in five participants were without treatment for four years before, during and after pregnancy. Over 9,000 people live with familial hypercholesterolemia (FH) in Norway, but another 16,000 people may have hereditary high cholesterol without knowing it.
Familial hypercholesterolemia is an inherited condition in which a genetic defect causes elevated cholesterol levels from the very first years of life, leading to a heightened risk of heart disease. Though the risk of heart disease is the same for both women and men with FH, women may miss out on active treatment time because of pregnancy.
Professor Kirsten B. Holven and her research group at the Department of Nutrition at the University of Oslo wanted to look into this. They carry out research on FH, cholesterol and atherosclerosis. The team recently published an article on women with FH and pregnancy.
The project was conducted as a digital survey among 102 women with FH in Norway and the Netherlands.
An average of two years without treatment
The most commonly used medicines for lowering cholesterol are statins, and these medicines should not be used when planning a pregnancy, during pregnancy and while breast-feeding.
“The period without treatment before, during and after pregnancy was on average a little over two years, but 20% of the participants were without treatment for four years. We also found that FH women appear to breast-feed less than women without FH,” explains author Marianne Klevmoen.
In need of more research
The authors believe that more attention should be paid to this group of FH patients. “FH women miss out on active treatment time early on in life due to pregnancies and breast feeding. They should therefore be closely followed up in order to keep the time without active treatment to a minimum. We need more research on the importance of these periods of non-treatment,” Holven says.
The professor says that women that do not have FH, on average get a heart attack 10 years later in life than men, when they are 65 years old. “For women and men with FH we see that they have heart conditions at about the same age. The question we ask, is if this difference is due to the fact that women with familial hypercholesterolemia miss out on treatment due to pregnancy,” she says.
The article was based on Marianne Klevmoen’s master degree thesis in nutritional science, for which Holven was the main supervisor. Both are affiliated to the National Advisory Unit on FH (NKT for FH) at Oslo University Hospital.
Vital to diagnose FH at a young age
High cholesterol in the blood gives no symptoms. Since FH is hereditary, people who have close relatives with high cholesterol or who have had heart disease at an early age are encouraged to measure their cholesterol by means of a blood test taken by their GP.