Learn Your Lipids

Foundation of the National Lipid Association

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Definition
Diagnosis/Symptoms
Treatment
Tearsheets
Resources
FCS Cookbook

Familial Chylomicronemia Syndrome (abbreviated FCS) is a condition of very high triglycerides (a type of fat) in the blood which come from the diet. The enzyme that breaks down triglycerides from the diet is absent or does not work well, causing triglyceride levels in the blood to build up.

High triglycerides in the blood can cause episodes of pancreatitis, a painful and potentially life-threatening inflammation of the pancreas.






Although FCS is a genetic (inherited) condition, genetic testing is not required. Symptoms can vary and the age at which symptoms occur may vary. An individual can often have severe symptoms before FCS is ever diagnosed. Several identifiable symptoms can include:

  • Triglyceride levels in the blood over 750mg/dL (normal triglyceride levels are under 150 mg/dL) and usually in the thousands.
  • No reason, other than genetics, present for the high triglycerides. For instance: no poorly controlled diabetes, no diet high in sugar or fat, no low thyroid or kidney disease.
  • Episodes of pancreatitis, often starting in childhood.
  • Triglyceride levels that remain high despite taking the standard medications for triglycerides (fibrates, fish oil dietary supplements or prescription omega-3).
  • Breakouts of yellowish or white bumps over elbows, buttocks, feet, and trunk (seen when triglycerides are over 2000 mg/dL).
  • Stomach pain, confusion, trouble breathing, and numbness or tingling in hands and feet.

The fact that high levels of triglycerides can be associated with other health issues, such as alcohol consumption, unmanaged diabetes, or various medications, combined with the rareness of the disease, FCS is often misdiagnosed or remains undiagnosed. It is extremely important to connect with a Lipid Specialist who is trained in managing blood lipids if you have any questions or concerns.

There are currently no FDA approved therapies for the treatment of FCS.
Most patients take steps to reduce their risk of pancreatitis through lifestyle modifications including strictly limiting fat intake.

Diet & Lifestyle

When you have FCS, the enzyme that breaks down triglycerides from the diet is absent or does not work well, causing triglyceride levels in the blood to build up. You are unable to remove these fats from your blood and you must avoid eating foods high in fat. A buildup of triglycerides in the blood can cause severe abdominal pain due to pancreatitis (inflammation of the pancreas). Sticking to a low-to-no-fat diet is essential to reduce the pain and pancreatitis risk. Download the FCS Diet Tearsheet for more helpful tips.

Lipid Specialist

If you have FCS or are concerned that you might have FCS, it is important to see a lipid (cholesterol) specialist. Click here to find a Lipid Specialist in your area.

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New!

FCS-What You Need to Know

Designed for patients, this tear sheet explains what FCS is, how FCS is diagnosed and where patients can go for more information.

Download
New!

Living with FCS

This tear sheet provides diet and healthy eating tips for individuals living with FCS.

Download

Genetic Testing

Discuss the need for genetic testing with your healthcare provider. It is not necessary for most. If you have a genetic test, the result may help determine the best treatment and if any of your family members should be tested.

Download

We are unable to supply Patient Tear Sheets in printed form. Tear Sheets are provided for your convenience and your patients and may be reproduced without modification digitally or in print with copyright and attribution information intact.

FCS Focus





The FCS Focus provides information, support, resources and FAQs on FCS. In addition, you can request a Free Guide to FCS on the FCS Focus site that can be printed or provided digitally for additional information and help.

FCS Focus

The FCS Foundation





The FCS Foundation site is for FCS patients, caregivers and family members offering information, resources and support. The goals of the site are to build connections and offer resources and support to help FCS patients become informed advocates for themselves and their disease.

The FCS Foundation

Global Genes





Global Genes® is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community.

Global Genes

LPLD Alliance





LPLD Alliance is the next step in working to meet the needs of patients with LPLD or one of the related conditions.

LPLD Alliance

National Lipid Association





The National Lipid Association (NLA) is a nonprofit, multidisciplinary medical society focused on enhancing the practice of lipid management in clinical medicine.

National Lipid Association

National Organization for Rare Disorders (NORD)





A patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

NORD

National Pancreas Foundation





The National Pancreas Foundation provides hope for those suffering from pancreatitis and pancreatic cancer through funding cutting edge research, advocating for new and better therapies, and providing support and education for patients, caregivers, and health care professionals.

National Pancreas Foundation

Rare Disease Report





Rare Disease Report is a website and weekly e-newsletter that offers an independent voice for the Rare Disease Community. It strives to bring together medical, scientific, investment, regulatory, and advocate professionals interested in rare diseases and orphan drugs.

Rare Disease Report

About Learn Your Lipids

The Foundation of the National Lipid Association created Learn Your Lipids to support patients and families with cholesterol and triglyceride problems through education, awareness, and advocacy in order to decrease suffering and death. The Foundation also works to support the initiatives of the National Lipid Association.

Phone: 904-309-6260

info@learnyourlipids.com

Recent News

The Foundation of the NLA raises more than $27,000 at the National Lipid Association Scientific Sessions

This year's Miami Nights Gala at the Scientific Sessions in Aventura, Florida was a great success, raising $27,710 for the Foundation of the National Lipid Association's important patient resource and health awareness initiatives.

...Read More

Akcea and Ionis Announce Approval of WAYLIVRA® (volanesorsen) in the European Union

May 7, 2019 - BOSTON, Mass. and CARLSBAD, Calif., May 7, 2019 (GLOBE NEWSWIRE) – Akcea Therapeutics, Inc. (NASDAQ:AKCA), an affiliate of Ionis Pharmaceuticals, Inc., and Ionis Pharmaceuticals, Inc. (NASDAQ:IONS), announced today that WAYLIVRA has received conditional marketing authorization from the European Commission (EC) as an adjunct to diet in adult patients with genetically confirmed FCS and at high risk for pancreatitis, in whom response to diet and triglyceride lowering therapy has been inadequate.

...Read More

2018 Annual Report

January 31, 2019 - The Foundation of the National Lipid Association made great progress in 2018. Fueled by a reinvigorated mission statement established in 2017, the board and our supporters worked harder than ever to continuously improve the quality of our initiatives and resources, collaborate with like-minded organizations, and recognize the much-needed research of healthcare providers and researchers in our field aiming to close gaps in patient care.

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The Foundation supports the screening of patients in rural Kentucky

September 29, 2018 – The Foundation of the NLA partnered with Health First Community Health Center to provide free LDL-C, TG, and A1C screenings to 21 people in rural Dixon, KY on September 29, 2018. Foundation board member Joyce Ross, MSN, CRNP, CLS, FNLA attended the screening to provide counsel and interpretation assistance to the participants after they received their test results.

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Cohen, Seidah Receive 2018 Akira Endo Awards

TORONTO (June 12, 2018) – Jonathan C. Cohen, PhD, and Nabila G. Seidah, PhD, each received a 2018 National Lipid Association/Foundation of the NLA Akira Endo Award for Achievements in the Development of Treatments to Prevent Atherosclerosis at the XVIIIth International Symposium on Atherosclerosis opening ceremony on Saturday, June 10 for their research that led to the development of PCSK9 inhibitors.

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Foundation Raises More Than $20,000 at Scientific Sessions Gala

April 30, 2018 - This year's Dinner Gala & Silent Auction at Scientific Sessions in Las Vegas was a smashing success, raising more than $20,000.

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