The burden of living with familial chylomicronemia syndrome (FCS) goes well beyond the physical.³⁶

FCS can impact quality of life, finances, social interactions, and more.

Patients with FCS have a very restrictive diet and the physical burden it presents, such as acute pancreatitis, can lead to other, non-physical burdens, with many patients experiencing emotional, social, and cognitive symptoms.

Burden of diagnosis

Misdiagnosis may leave people with FCS suffering from symptoms without knowing the source – and could delay proper disease management.

On average, people living with FCS see five healthcare professionals (HCPs) before receiving a diagnosis of FCS, with some seeing more than ten.

Economic burden

The burdens of FCS go beyond getting a diagnosis. Forty percent of people with FCS report they are not employed. Among these unemployed people with FCS, as well as those who are partially employed, 94% cite FCS as contributing to their employment status.

Social burden

Approximately 75% of those with FCS feel it restricts their social lives. Dietary requirements such as having to plan meals, carry prepared food, and turn down offered items may have a more tangible impact on how they socialize with friends and family, but other factors come into play as well. Among these are family stress, exhaustion from having to explain FCS, difficulty being spontaneous, and feeling like a burden to others.

Mental and emotional burden

Nearly two thirds of patients with FCS say it impacts their mental and emotional well-being.

On the emotional side, a number of separate symptoms may occur. While anxiety, fear, and worry play a major role, self-worth can also see an impact from feelings of embarrassment, isolation, and helplessness. 

Closely linked, further cognitive symptoms may arise, from difficulty concentrating to forgetfulness.