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, will most likely be 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
Dietician
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 dietician 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 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.
Stay vigilant
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 high triglycerides often includes dietary changes, such as drastically reducing fat intake as compared to a regular diet, 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.
“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
People living with FCS struggle with similar issues
Percent of people reporting the impact of an FCS restrictive diet on life:
Extremely time consuming
Energy draining
Ineffective at stopping all symptoms
Percent of people reporting that FCS has a negative impact on aspects of life:
Employment
Emotional and mental well-being
Social relationships
Result from an online, anonymous, quantitative survey of 166 people with FCS from 10 countries (Australia, Canada, Germany, India, Netherlands, Portugal, Spain, Sweden, United Kingdom, and the United States). Results were patient reported.
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.
Read experiences and insights shared by people living with FCS
Your doctor can visit lowertriglycerides.com. It explains FCS in medical terms and may help them understand how to better support you.
Not an actual patient
If your doctor is not currently aware of FCS, they may be interested in knowing:
FCS is very rare, affecting somewhere between 1 and 13 people per million in the US
FCS can cause triglyceride levels 10 to 100 times the normal level
FCS can cause chronic, debilitating multi-organ system symptoms, potentially including acute pancreatitis, which could be fatal
People with FCS are generally advised to consume less than 15-20 grams of fat per day
Sources:1. Pallazola VA et al. Eur J Prev Cardiol. 2020;27(19):2276-2278. 2. Gaudet D et al. N Engl J Med. 2014;371(23):2200-2206. 3. Falko JM. Endocr Pract. 2018;24(8):756-763. 4. Williams L et al. J Clin Lipidol. 2018;12(4)908-919.
Almost anybody you come in contact with, from the certified nursing assistant to the nurse, to the people in the emergency room, to the people in the ambulance that take you to the hospital, they need to know…this is a very rare disease.
—Charles, living with FCS
We’ll get there [soon]
Support
Nutrition, exercise, and hydration are key to managing very high triglycerides in your everyday life.
