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More Symptoms of FCS

Shared Experiences Among People With FCS

As Familial chylomicronaemia syndrome is ultra-rare, the chances of meeting others with the same restrictions is very unlikely.  The manifestation of the condition can also vary between affected siblings making each experience of the condition unique.

The FCS InFocus survey was commissioned by the pharmaceutical company Akcea Therapeutics who were seeking to understand the impact that the condition had on the lives of patients.

You can read the interim results here 

Patient reported symptoms from meetings held by LPLD Alliance have identified a number of shared symptoms and experiences not captured or not widely acknowledged in the literature.

‘Post-prandial fatigue’:  This occurs when triglyceride levels are high and is similar to the lethargy most people feel after a large meal, but is persistent.

Fatigue: Due to maintaining a very low fat diet and not taking in enough calories and energy.

Brain fog: Feelings of confusion and of the mind going blank.

Poor memory

Memory loss

Stress: Due to having to manage the restrictions the condition imposes.

Laboured breathing

Joint pain

Depression: Struggling with managing the restrictions can lead to negative feelings about self and life.

Bulimia:  Self-induced vomitting to avoid digesting any food eaten with a high fat content.  This can quickly escalate to bulimia.