High cholesterol levels are often associated with unhealthy lifestyle choices. But in reality, up to 80% of hypercholesterolemia is genetically pre-determined. EurActiv France reports.
Many sufferers of familial hypercholesterolemia (FH) are unaware of their condition and do not take any kind of treatment. The Belgian patients’ associations Belchol and the Belgian Society of Cardiology organised a conference at the Belgian parliament in Brussels on 20 November, to address this lack of information.
This was a chance for doctors, patients, politicians, pharmacists and health insurance representatives to exchange expertise with a view to helping the public, and each other, to better understand the issue.
All the participants agreed that their understanding of HF was insufficient.
Even in the medical community, high levels of cholesterol are often associated with unhealthy lifestyle choices, which in turn are associated with people of a certain age. As a result, FH is rarely spotted among younger sufferers.
According to Ernst Rietzschel, a specialist at Ghent University Hospital involved in the creation of the patients’ association Belchol, “Lifestyle only accounts for 20% of a patient’s cholesterol level. Genetic baggage determines the other 80%.”
The first step in tackling FH would be to clarify its definition, including among specialists, and particularly paediatricians, who often lack training on problems linked to cholesterol.
Professor Olivier Descamps said, “These are very simple messages: FH is a genetic illness, and we have to remember this whenever we see family history or unusually high cholesterol levels.”
As a genetic disease not linked to diet, and with symptoms that are often invisible, its consequences can be very dangerous.
To make matters worse, “The usual association between excessive cholesterol levels and unhealthy lifestyles creates a certain stigmatisation of patients and their families, which sometimes discourages them from seeking the proper care,” said Rietzschel.
This is where the patients’ associations, like Belchol, take up the strain, pushing the authorities to take concrete measures.
4.5 million sufferers in Europe
FH is a genetic illness that affects around 4.5 million people in Europe, although most of these cases are undiagnosed. It usually displays no symptoms for around the first 30 years of a patient’s life, but its consequences can be serious, and even deadly.
Right from birth, FH leads to high levels of LDL, or “bad cholesterol”, in the blood. As a result, cholesterol forms deposits inside the arteries, which can cause cardiovascular diseases in patients as young as 30, or sometimes even younger. Without treatment, the arteries of a 35 year-old with FH look like those of a typical 70 year-old.
An average level of LDL cholesterol is around 130 mg/dl (1.30 grammes per litre). But among sufferers of FH, LDL levels are generally between 250 and 400 mg/dl, Rietzschel explained.
Treatment for the illness typically consists of a daily regime of statins to reduce cholesterol. Diet and exercise are also particularly important alongside medical treatments for sufferers of high cholesterol.
Patients should start treatment as young as possible to achieve the maximum positive effect. “We can start at age six, with very low doses to regulate the child’s cholesterol level at 130 mg/dl, around the average,” Descamps explained. Rietzschel added that it was also easier for young children to adopt life-long healthy eating habits from a very young age.
Studies show that treatments started in adulthood can delay the more dangerous symptoms of FH, but that patients who start treatment before the age of 12 can expect to live a normal life, with no increased risk of cardiovascular disease.
>>Read: Rare diseases affect 30 million Europeans (in French)