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). Expert guidelines support lowering triglycerides below 500 mg/dL to reduce the 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).

Icon of a pill alongside a closed pill bottle. 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.

Icon of two medication capsules. Fibrates

Fibrates induce triglyceride clearance through various pathways, including by modestly increasing LPL and suppressing the transcription of apolipoprotein C3 (APOC3); however, the overall clinical benefit of fibrates in people with FCS is minimal.

Icon of a fatty acid. 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.

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.

None of these treatments have been shown to lower the risk of acute pancreatitis in people with extremely high triglycerides.

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:

81%

extremely time consuming

70%

energy draining

53%

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:

Icon of a clock with urgency.

Constant uncertainty about the possibility of acute pancreatitis or pain.

Icon of an anxious looking face.

Anxiety, fear, or worry about their health.

Icon of a fork and knife.

Uncertainty about what or how much to eat.

Icon of helpless looking face.

Feeling out of control or helpless because of their FCS.

Percentage of people reporting that FCS has a negative impact on aspects of life:

94%

Employment

58–66%

Emotional and mental well-being

68–82%

Social relationships

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:

Tap the green hotspot to learn more

Medical illustration of a translucent human torso with critical organs highlighted.
  • Difficulty concentrating (16%)
  • Impaired judgement (11%)
  • Lipaemia retinalis (9%)
  • Brain fog (8%)
  • Forgetfulness (8%)
  • Abdominal pain (41%)
  • Acute pancreatitis (40%)
  • Bloating (37%)
  • Indigestion (27%)
  • Diabetes (16%)
  • Chronic pancreatitis (11%)
  • Enlarged liver (hepatomegaly, 11%)
  • Enlarged spleen (splenomegaly, 10%)
  • Hypertension (10%)
  • Feeling of physical weakness (asthenia, 30%)
  • Eating disorders (23%)
  • Fatigue (23%)
  • Peripheral neuropathy (7%)

People with extremely high triglycerides despite standard of care need more options to manage acute pancreatitis risk and the social, emotional, and physical tolls of their disease.

Gain more patient insights

Learn about the personal challenges faced by people living with FCS, their family members and caregivers, and the entire FCS community in the Spotlight on FCS paper.

Read the paper

Imagine if we could reduce the risk of acute pancreatitis

Expert guidelines support lowering triglycerides below 500 mg/dL to reduce the risk of acute pancreatitis.

See the risk
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Show References Expand Collapse

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  12. Grundy SM, Stone NJ, Bailey AL, et al. 2018 AHA/ACC/AACVPR/AAPA/ABC/ACPM/ADA/AGS/APhA/ASPC/NLA/PCNA guideline on the management of blood cholesterol: executive summary: a report of the American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines.Circulation. 2019;139(25):e1046-e1081.
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