“People with FH sometimes feel that taking statins is an overreaction”

Since 2007, the Gelre Hospital in Apeldoorn has been home to the Vascular Expertise Center (VEC), where people with FH are treated. According to Sybiel Bakker-Aling, a nurse practitioner specializing in vascular medicine, this LEEFH center works closely with vascular surgery and cardiology. People with FH constitute an important patient group at the VEC.

“What’s interesting about the group of people with FH is that I also treat a lot of young people. That makes my work very varied,” says Sybiel. She supports patients with all kinds of issues. “In addition to lifestyle and medication, we often talk about how the rest of the family is doing. For example, whether everyone knows that FH runs in the family and that they can get tested. It’s important that this happens; if informing family members isn’t going well, the LEEFH Foundation can help.”

Sybiel points out that FH also has a social impact. “I often hear that people with FH struggle with the perception that taking statins is excessive. That you can also lower your cholesterol through healthy eating and exercise. Of course, that’s not true. It’s upsetting to hear that they sometimes have to defend themselves.”

Deployment, monitoring, and enforcement

The team at the LEEFH Center at Gelre Hospital noticed that people with FH are often treated in general practice the same way as someone with high cholesterol where heredity does not play a role. “I see that people with FH are sometimes treated at a general practice, where they receive lifestyle advice. This is the first line of treatment, and only if that doesn’t help are medications prescribed. That can easily take two years. Lifestyle is important, but medication is necessary. ‘Initiate, monitor, and maintain’ is my motto when it comes to medication for FH. As far as Sybiel is concerned, the existence of specialized LEEFH centers for people with FH is therefore essential.”

“In addition to treating and examining them, we can explain to people with FH which subtype they have and tailor their treatment accordingly; what does a person need to do to prevent the risk of a heart attack? We also explain why it’s important to conduct family screening.”

Challenges

People with FH can receive care at the Vascular Expertise Center at Gelre Hospital Apeldoorn starting at a young age. “If the parents agree, we test the umbilical cord blood immediately after the child is born. If FH is detected, the parents meet with the pediatrician. When a child turns eight, they begin further treatment there. In this way, we navigate various life stages together. I find it a challenge to adapt to these changes as effectively as possible. For example, I discuss with adolescents that the medication is not compatible with a potential pregnancy. We also explain what is required if they wish to become pregnant: stopping the medication and close monitoring.”

Another challenge is the side effects of cholesterol-lowering medications. “We usually find a suitable combination with cholesterol-lowering tablets that does not cause any side effects. Fortunately, in addition to statins and cholesterol absorption inhibitors, we now have other cholesterol-lowering therapies available, such as PCSK9 inhibitors.”