Burden of extremely high triglycerides

The standard of care, including traditional triglyceride-lowering therapies and restrictive dieting or meal planning, may not be enough for people with Familial Chylomicronemia Syndrome (FCS) to achieve the guideline-recommended goal of <500 mg/dL to lower risk of acute pancreatitis. 

Traditional treatment options are limited

Medicines traditionally used to lower triglycerides, such as statins, fibrates, and omega-3 fatty acids, may not suffice for people with extremely high triglycerides, including people with Familial Chylomicronemia Syndrome (FCS).

Traditional triglyceride-lowering therapies that are used to manage triglycerides have limited efficacy for people with FCS or with diseases with a similar presentation. Most traditional triglyceride-lowering therapies activate lipoprotein lipase (LPL) activity, which is missing or nonfunctional in people with FCS.

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Statins

Statins may be useful in protecting against atherosclerotic cardiovascular disease (ASCVD); however, they are not clinically useful for people with FCS and do not lower acute pancreatitis risk.
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Fibrates

Fibrates induce triglyceride clearance by activating LPL activity; however, due to the loss of LPL activity in people with FCS, the clinical benefit of fibrates is minimal.
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Eicosapentaenoic Acid (EPA)

EPA, an omega-3 fatty acid, has been shown to moderately reduce triglyceride levels caused by other diseases but are not effective for people with FCS.

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Restrictive diets can negatively impact quality of life

Some people use intensive dieting to manage high triglycerides, however this strategy that avoids ingesting fats to maintain lower overall fasting triglycerides is very burdensome.

People with extremely high triglycerides that persist despite standard of care may try to prevent rises in triglyceride levels through dietary restriction of total fat intake, abstinence from alcohol, and avoidance of medications known to increase triglyceride levels.

In a survey of 166 people with FCS, participants reported their restrictive diet was:

Extremely time consuming

Energy draining

Ineffective at stopping all symptoms

Even with treatment, extremely
high triglycerides add an emotional and social burden

People with FCS report that their disease impacts their mental well-being and their social lives.

In a survey of 166 people with FCS, the most common emotional symptoms were:

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Constant uncertainty about the possibility of acute pancreatitis or pain.
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Anxiety, fear, or worry about their health.
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Uncertainty about what or how much to eat.
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Feeling out of control or helpless because of their FCS.

Employment

Social relationships

Emotional and mental well-being

An online, anonymous, quantitative survey of people with FCS from 10 countries (Australia, Canada, Germany, India, Netherlands, Portugal, Spain, Sweden, United Kingdom, and United States). Results were patient reported.

Stories your patients can relate to

Listen to people with FCS share how the disease impacts their lives.

Meet Julie—mother, wife, and person living with FCS. Join her as she shares her long road to diagnosis, discussing how identifying her condition has not only shaped her into the person she is today, but has also helped her manage the burden of her very high triglycerides.

For years, Scott was pushed off by doctors, facing the constant misdiagnoses and stigma that many people with FCS experience. Fueled by a drive to get to the bottom of his misdiagnosis, Scott became an advocate not only for himself, but also for the greater FCS patient community.

Fin and Devon—father and caregiver, and son with FCS—share how they’ve learned to live beyond an FCS diagnosis. With the help of an early diagnosis and a strong support system every step of the way, the duo have learned creative ways to approach life. Because life shouldn’t be defined by FCS.

Jill has never known what it’s like to not have FCS. Despite facing adversity every step of the way, the mother, caregiver, and founder of Action FCS has found a way to reclaim her FCS journey. Listen as she shares her reality of living with FCS, and how it led her to become an advocate for the greater patient community

Extremely high triglycerides have systemic consequences

In addition to causing acute pancreatitis, FCS can impact the liver, spleen, heart, and eyes, and cause other systemic problems.

Symptoms and comorbidities reported in a survey of 166 people with FCS:

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  • Difficulty concentrating (16%)
  • Impaired judgment (11%)
  • Lipemia retinalis (9%)
  • Brain fog (8%)
  • Forgetfulness (8%)

We’ll get there [soon]

Imagine if we could reduce the risk of acute pancreatitis

Guidelines consistently establish <500 mg/dL as the goal of triglyceride management.

See the risk

Show References
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