A comprehensive healthcare team may help you receive tailored care and dietary guidance throughout your life. This comprehensive approach may offer a better chance to manage FCS and may help reduce your risk of acute pancreatitis.
Some people may rely on their primary care doctor to coordinate specialist care and testing. A lipidologist, cardiologist, or endocrinologist, however, is often involved in the management of your overall care of this condition.
Your team may include some or all of the following specialists:
Lipidologist
Endocrinologist
Cardiologist
Pancreatologist
Dietitian
Psychologist or Social Worker
Caregiver
Primary Care Physician
Lean on lipid experts
Lipidologists are specialists in diagnosing and treating lipid disorders. They could have experience in dealing with very high triglyceride conditions, such as FCS.
A registered dietitian nutritionist (RDN) could offer personalized dietary guidance, including tips on reading nutrition labels, selecting appropriate foods at the grocery store, and making healthy choices when dining out or eating in unfamiliar settings, such as other people’s homes.
Your RDN may be able to help you put together the best possible plan to meet your needs:
Talk about foods you like and don’t like, and about any allergies or additional restrictions
Let them know about your eating habits and schedule
Work together on a plan that you can stick with
Maintain your mental health
Every day, people with FCS have to navigate the challenges of living with a disorder that requires a lifestyle different from that of their family and friends. The severely restrictive diet alone may make social situations awkward, uncomfortable, and lonely, resulting in withdrawal. And, dealing with the symptoms of FCS may also have an impact on your emotional and mental health.
Talking to a social worker or mental health professional may support your emotional well-being.
Add variety
While you do need to maintain a very low-fat diet, you may find that there’s room to add variety. Any member of your healthcare team could have unique or new medical insights that could help enhance your restrictive diet.
At the end of each visit, talk to your healthcare professionals about possible changes to your very low-fat diet.
I think a good primary care doctor can coordinate the little things like the standing orders for triglyceride draws.
—Julie, living with FCS
Hear from others living with FCS
Watch Julie’s story to learn more about her diagnosis journey and how she’s living with FCS.
For people with FCS, certain treatments don’t work well. Common treatments for high triglycerides, such as statins, fibrates, and omega-3 fatty acids (EPA), offer minimal or no benefit in lowering triglycerides in FCS patients.
Managing very high triglycerides often includes meal planning to drastically lower your fat intake, avoiding alcohol, and steering clear of certain medications. While these steps may help some people, they are difficult to maintain long-term.
Statins
Statins are drugs that help lower cholesterol levels in the blood. They may help protect against heart disease, such as atherosclerotic cardiovascular disease (ASCVD). They haven’t been shown to help reduce very high triglycerides (above 880 mg/dL) or to lower the risk of acute pancreatitis.
Fibrates
Lipoprotein lipase (LPL) is an enzyme that breaks down triglycerides. Fibrates, which work by boosting LPL activity, may not be effective in people with impaired LPL function.
Eicosapentaenoic Acid (EPA)
EPA, an omega-3 fatty acid, has been shown to lower triglycerides in other conditions but may not be effective for treating FCS.
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Lower is better
Consider what works best for you to lower your triglycerides to the recommended goal of levels below 500 mg/dL.
A counseling specialist could be an important member of your healthcare team
People living with FCS may experience anxiety, fear, embarrassment, depression, and withdrawal as a result of the impact the disease has on their everyday lives. Talking to a social worker or mental health professional may support your emotional well-being by helping you deal with the struggle and stigma of FCS.
“I’m 47, and I was diagnosed with FCS at 3 weeks old. I have been a guinea pig my entire life, trying all kinds of different things. We’re told one way, ‘this will help a little bit’, but then it won’t help because you have FCS. It’s just…it gets frustrating.”
—Darlene, living with FCS
Read experiences and insights shared by people Living with FCS
Regular testing keeps you informed of triglyceride levels
If you are diagnosed with FCS, talk to your doctor about scheduling regular monitoring with a team of specialists, such as lipidologists, endocrinologists, cardiologists, pancreatologists, primary care physicians, dietitians, and your caregiver. Your doctor may order tests to track your triglyceride levels every 3 months, or as needed, to monitor levels and guide treatment decisions.
People living with very high triglycerides should get their lipids checked every 3 months, as necessary.
—AACE Consensus Statement
When the triglycerides are very high, reducing the level to below 500 mg/dL to prevent pancreatitis becomes the primary goal of therapy.
—National Lipid Association
We’ll get there [soon]
Very high triglycerides could mean that you have FCS
