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Burdens that go beyond 
physical symptoms

Familial chylomicronemia syndrome (FCS) can impact quality of life, economic viability, social interactions, and more

The physical burdens of FCS such as acute pancreatitis and dietary requirements can lead to other, non-physical burdens, with many patients experiencing emotional, social, and cognitive symptoms.

Burden of diagnosis

For those with FCS, getting a diagnosis means spending a lot of time traveling to and visiting healthcare professionals (HCPs). On average, they see five HCPs before receiving a diagnosis of FCS, with some seeing more than ten.22

Over the course of those visits, almost half receive a misdiagnosis before a correct one. This may leave them suffering from symptoms without knowing the source – and could delay the use of management strategies dictated by their condition.

Economic burden

Among unemployed or partially employed people with FCS, 94% cite FCS as contributing to their employment status.22

Social burden

Approximately 75% of those with FCS feel it restricts their social lives.22 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

Economic, social, and diagnostic burdens do not work in isolation. 
Nearly two-thirds of patients with FCS say it impacts their mental and emotional well-being.22 

Closely linked, cognitive symptoms like difficulty concentrating 
and forgetfulness may arise.22

Patient case studies

(Images are not of actual patients and case studies are illustrative.)