Erik Stroes, Medical Director, introduces himself

“We’re looking forward to the screening for FH patients!”

Strong Interest in Genetics
Since January, Erik Stroes (a vascular internist with a strong interest in genetics) has been the new director
of Leefh. He is taking over the duties from Janneke Wittekoek. “When she stepped down, I felt it was important
to ensure continuity,” said Erik Stroes.
“Janneke Wittekoek has meant a great deal to LEEFH. I consider it an honor to have been asked to take over these
duties.” Since the STOEH no longer exists, LEEFH has far fewer resources to find
people who may be affected by hereditary high cholesterol. “That is indeed
a significant challenge,” Stroes believes. ‘There are still 40,000 people with familial
hypercholesterolemia (FH) who haven’t been identified in the Netherlands alone; and that’s a very large number. People
die of cardiac arrest because they don’t know they have FH, often at a young age; that’s
heartbreaking.’

What will the new medical director mean for these people?
“In October, we’re launching a campaign for primary care. For example, we’re developing an FH knowledge quiz for nurse practitioners and general practitioners at
. You can also request a free flipchart to help recognize FH and inform people about
. Additionally, several major laboratories will automatically add a note to
for abnormal LDL levels stating, ‘Be aware of the possibility of familial hypercholesterolemia.’ We all need to develop these kinds of
initiatives because the population screening program (back when LEEFH
was still called STOEH) was actually discontinued too early and for unclear reasons. We now have to seek out the
families ourselves, and family members often no longer have contact with one another. We
cannot simply leave that initiative up to the family.’

Early Detection
It is often said that it is important to identify people as early as possible. Why is
that? Stroes agrees: “In recent years, pediatric cardiologist Bert Wiegman has identified around
4,000 children with FH (in collaboration with the STOEH). Wiegman has conducted extensive
research on the importance of early detection. The oldest child he identified
is now 43 years old. His conclusion is that ‘FH children’ who started statin therapy
at a young age show no signs of cardiovascular disease even many years later. A spectacular
result! If FH is discovered later in life, aggressive treatment is often necessary to counteract the
, and not all the damage to the blood vessels can be repaired. If FH
is detected early, the outcome is therefore much better.

The Importance of Population Screening
“When STOEH approached family members, we were able to screen an average of 20 additional family members
for FH; of these, about half were also found to have FH. If we found one patient, we knew
that we could treat many more family members early on; that is, before
they had developed a heart attack. Now that funding has stopped, only 1.9 family members are screened per new FH patient
. All those other family members remain ‘unmonitored’
, meaning that FH will only be diagnosed at a much later age. That is a
shocking deterioration in the health status of these families,” says Stroes. According to him, the government
also has a role to play here. Still, Stroes says there are some bright spots, partly
thanks to the efforts of the LEEFH Foundation:

1.  Currently, 2.5 family members are screened for each new FH patient; a
   cautious increase.
2.  Relatives of FH patients with a known mutation can be tested for the presence of this mutation “free of charge” at
   (test kits can be requested via
   www.LEEFH.nl)
3.  An increasing number of laboratories are issuing a warning for LDL-C levels above 5 mmol/L to raise awareness among
   about possible familial hypercholesterolemia
4.  There is increasing collaboration with the Dutch Heart Foundation. FH is a major
   condition that can cause heart problems. 1 in 230 people has it! And, provided it is detected early
   , cardiovascular disease can largely be prevented in FH patients.
   High cholesterol
   Finally, Erik Stroes urges healthcare providers and individuals with high cholesterol or cardiovascular disease in
   the family to be aware of the possibility of familial
   hypercholesterolemia. Early detection of FH can prevent a great deal of suffering. “But we are looking forward to the
   detection of FH patients! By 2029, we hope to have identified more than three-quarters of all FH
   patients in the Netherlands!”