As LPLD and the related conditions are 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.
In the last year there have been a number of patient advisory boards arranged by the pharmaceutical company Akcea Therapeutics. One was held in London and there have been others in America. The aim for the company was to fully understand the impact of the condition has on us.
These meetings 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.
Stress: Due to having to manage the restrictions the condition imposes.
Depression: Struggling with managing the restrictions can lead to negative feelings about self and life.
Bulimia: Making yourself sick to avoid digesting any food you have eaten with a high fat content. This can quickly escalate to bulimia.