Many healthcare providers are unaware that FH exists.

Interview with FH consultant Danick Werner (Amphia Hospital)

Many healthcare providers are unaware of LEEFH's existence.

My name is Danick Werner and I have been working as a nurse specialist at the Internal Medicine outpatient clinic at Amphia Hospital in Breda for three years.  Since January 2016, Amphia has been a regional LEEFH center, and I have been involved as a consultant in the detection and education of patients with familial hypercholesterolemia (FH),' explains the nurse practitioner. 'An important focus of my work is raising awareness of FH among healthcare providers. Many general practitioners and medical specialists are unaware that, after the termination of the population screening for FH in 2013, the Foundation for the Detection of Hereditary Hypercholesterolemia (StOEH) transferred its accumulated knowledge, experience, and data to the LEEFH Foundation.

screening program Thanks to the screening program, nearly 30,000 of the estimated 70,000 FH patients have been identified in 20 years. If we want to detect the remaining 40,000 people who do not yet know they have FH, it is very important that healthcare providers, including general practitioners, are informed and receive additional training, says Danick Werner. Once FH has been diagnosed, they often know the right course of action to take in order to refer patients. This particularly concerns people who have not yet been diagnosed with FH. They are sometimes only traced once cardiovascular disease has already occurred, even though they may have been aware of their sky-high cholesterol levels for years. That's a shame... Early detection and treatment can significantly reduce the risk of cardiovascular disease.

awareness To raise awareness, Amphia regularly organizes meetings for healthcare providers in the region who are involved in the care of patients with FH, as well as for the patients themselves. 'For example, in the fall of 2016, we organized a meeting day in collaboration with the Heart and Vascular Group. Extra attention will also be paid to this during National FH Day on September 24.'

family trees As a regional FH consultant, Danick also maps out family trees. She finds this work enjoyable and interesting. However, she also encounters challenges in this work. "It can be difficult when family members have little or no contact with each other. Since the population screening program ended, we are no longer allowed to actively approach family members. This means we are dependent on the patient sitting across from us in the consultation room."

According to the FH consultant, the population screening program was discontinued too soon. "It's not 1 in 500 people who have FH, but 1 in 240," she explains. "We're not there yet. There's still a lot to be gained in terms of detection and treatment," says Danick Werner.