Same color eyes run in families. Same hair runs in families. High cholesterol runs in families, but that is not where the story ends. It’s not something to be accepted with no action.

For many families, high cholesterol and early cardiovascular disease stem from genetic disorders – including familial hypercholesterolemia (FH) and elevated lipoprotein(a), or Lp(a).

FH or high Lp(a) is a diagnosis that comes with  treatment, management, and advocacy and also sharing of information among family members in order to save more families, more hearts.

It is important that you first understand your risk of inherited cardiovascular disease so that you can better manage it throughout your lifetime. And to understand your risk, screening and diagnosis are imperative.

Two hidden genetic disorders that can lead to very early heart disease are familial hypercholesterolemia (FH) and elevated lipoprotein(a), also known as Lp(a). FH is a leads to very high LDL cholesterol since birth, so your health care provider may be treating you for high cholesterol but if they don’t realize you’ve had high cholesterol your entire life, your treatment may not be aggressive enough. Since FH is passed down in families, your health care provider is missing the opportunity to test your children, siblings, and parents for FH. Only about 20% of people with FH know they have it. To learn more about FH click here.

High Lp(a), is also a genetic condition that can significantly increase the risk of early cardiac disease. Almost everyone gets tested for high cholesterol, but fewer than 1% of Americans have had their Lp(a) measured.  An Lp(a) screening is not part of a standard blood test that provides your cholesterol levels.. An Lp(a) test measures the level of Lipoprotein(a) in your blood, and your doctor needs to order it directly.

It is estimated that roughly 20% of them have elevated levels. It’s safe to say that most people with high Lp(a) are unaware they are at risk. It is recommended that everyone have their Lp(a) checked at least once. For people who already have heart disease, have had a stroke, or have a strong family history of heart disease, there is more urgency to know your levels. To learn more about Lp(a) please click here.

Knowing that your LDL cholesterol is high is a good start, but there is a lot more that goes into assessing your heart health. It’s important to look at your whole lipid panel including your triglycerides and HDL. In adults, triglycerides should be below 150 mg/dL. If they are elevated consider increasing your exercise, cutting down on alcohol when necessary, and restricting simple carbohydrates like cookies, cakes, ice cream, white rice, and white bread. As for HDL (also known as the good cholesterol) men’s levels should be above 40 mg/dL and women’s above 50 mg/dL. Low levels may be genetic, but there are some lifestyle measures that can improve HDL. You can consider increasing exercise, weight loss or quitting smoking.

You also want to think about whether you have other heart disease risk factors. The more risk factors the greater the cardiac risk. So, make sure you know your blood sugar level and your blood pressure numbers. Exercise regularly, eat a well-balanced diet and maintain an ideal body weight.

Also consider how long your LDL has been elevated.  If you have genetically high LDL cholesterol, that’s different from gaining weight and having your LDL increase.  With genetically high cholesterol, your level has been high since birth, so your heart (and other arteries) has been exposed to high cholesterol for a very long time. People who have genetically high LDL are at higher risk for early heart disease than people whose LDL increased later in life.

Finally, if you have high LDL cholesterol, it is also important for you to have your Lipoprotein(a) measured.

For some people cardiovascular disease runs in their family due to shared exposure to bad habits such as cigarette smoking, sedentary lifestyle and poor diet which can lead to high cholesterol, diabetes, obesity, and high blood pressure. For other people cardiovascular disease runs in their family due to shared genetics. Two genetic disorders that can lead to very early heart disease are familial hypercholesterolemia (FH) and elevated Lipoprotein(a), also known as Lp(a).  To learn more about FH and Lp(a) click here.

FH is a genetic disorder that causes high levels of LDL cholesterol from birth. It affects approximately 1 in 250 people worldwide, but less than 20% of those with FH are diagnosed in the U.S. Early diagnosis and appropriate treatment, lowers the risk of cardiovascular disease.

Learn more about Familial Hypercholesterolemia→

Lp(a) is the shorthand for Lipoprotein(a). Also referred to as “L-P- little-A.” It’s a very complex lipoprotein that appears to increase the risk for both heart disease and stroke when elevated. It can cause artery blockages, inflammation and possibly clotting in arteries as well.

Learn more about Lipoprotien(a)→

FH and high Lp(a) are practically invisible. Often, the first sign of either condition is a heart attack. Some individuals do have xanthomas, which are accumulations of cholesterol under skin by the Achilles tendon, knuckles, elbows, and/or knees. Some have xanthalasmas, deposits of cholesterol under the skin on the eye lids. Some individuals may develop corneal arcus, a white arc near the colored part of the eye.

FH can be clinically diagnosed with a lipid panel and a family history of early heart disease or stroke. FH is suspected when untreated LDL cholesterol levels are above 190 mg/dL in adults and above 160 mg/dL in those 20 years old and younger.  FH can also be diagnosed with a genetic test which tests for common genes known to cause FH.

Learn more about diagnosing Familial Hypercholesterolemia→

A Lipoprotein(a) test measures the level of Lipoprotein(a) in your blood through a simple blood test. It is not part of a standard lipid panel, so your clinician will need to order it directly if they suspect you may have high Lp(a). Generally, results over 50 mg/dL or 100 nmol/L are considered high and could increase an individuals’ risk for heart attacks and stroke.

Learn more about diagnosing high Lipoprotein(a)→https://test.thefhfoundation.org/diagnosing-high-lipoproteina

Currently, FH is not curable, but it IS treatable. Now, more than ever, there are multiple treatment options for people with FH. Individuals with FH are not doomed to develop heart disease.  They can lead normal lives, if diagnosed early and treated adequately. High Lp(a) is not curable either, and treatments are in trials. For now, people with high Lp(a) are advised to control all other risk factors like quitting smoking, eating healthy, exercising, and keeping their LDL at normal levels.

The Family Heart Foundation provides a Specialist Search Tool to help you find a specialist near you. If you are not able to find one in your location, please contact us at 626-583-4674 or info@thefhfoundation.org and we will do our best to help.

View specialist map →