Family Sharing

Elevated Lp(a) Family Sharing Tools


It can come as a surprise to learn that you have elevated Lipoprotein(a), also known as Lp(a) – pronounced “LP little a”. While most people understand that having high LDL-Cholesterol (also known as the “bad” cholesterol) can increase the risk for heart disease, chances are that very few of your family members have even heard of Lp(a), and Lp(a) may be new to you as well.  Nonetheless, it is important that you share your diagnosis with your family because the truth is, your diagnosis in not just “your diagnosis.” It is, simply put, your entire family’s diagnosis.

Start with the basics. Although Lp(a) is a very complex lipoprotein that appears to increase the risk for both heart disease and stroke we can understand this lipoprotein by looking at its component parts. Lp(a) looks like LDL cholesterol with some key differences. LDL has a single apolipoprotein B attached on its surface. Lp(a), however, has an apolipoprotein B attached on its surface, and that apolipoprotein B has an apolipoprotein (a) attached to it. Lp(a) also contains oxidized phospholipids (OxPL).

Each of these components come together and results in a lipoprotein than can cause artery blockages (LDL portion), artery clogging (the apolipoprotein (a) portion), and inflammation (the oxidized phospholipid portion). It might help to share the picture below with your family members.

 

Lipoprotein(a) Structure

 

The challenging thing about elevated Lp(a) is it can be invisible. A person can have a totally normal cholesterol panel and still harbor a very high Lp(a). The only way to know if someone is at risk due to a high level, is to measure it. The blood test for Lp(a) is simple and should cost about $30, but it is important to find out if your insurance will cover the test and important to know that some labs charge far more than $30.

Elevated Lp(a) is genetic and caused by a dominant gene. If you have inherited the gene for elevated Lp(a), each of your siblings and children has a 50% chance of having inherited an elevated Lp(a) too. You have elevated Lp(a) because one of your parents has an elevated Lp(a) and passed that gene on to you.  Having high Lp(a) leads to an increased risk of early heart disease including heart attacks and strokes.

Whether your family is tight-knit or rarely in touch with each other, you are bound together by your genetics. Communicating with your family about having elevated Lp(a) isn’t easy no matter what your relationship is. For some people, sitting down face to face for a discussion is the best approach. For others sending a text, email or letter is better. The most important thing is to provide your family members with accurate information about Lp(a) so they can make decisions about their own health. It is crucial for your relatives to understand that while there is currently only one approved treatment for elevated Lp(a) called lipoprotein apheresis, other therapies are in clinical trials right now.  If someone has elevated Lp(a), it is crucial to make sure they manage any other cardiac risk factor such as high blood pressure, high LDL cholesterol and diabetes. It is important that they eat a heart healthy diet, get regular exercise, avoid excess weight and smoking.

What follows is practical information about Lp(a) and some potential ways to communicate with your family.

The Family Heart Foundation has created these resources that you can edit and use to communicate with your family member.

Dear Family Letter for elevated Lipoprotein(a) - Email

Personal Letter to Family Members for high Lp(a)

Dear Family Letter for elevated Lipoprotein(a) - Text

Text Message to Family Members for high Lp(a)

Dear Family Letter for elevated Lipoprotein(a) - Background Conversation

Background Conversation with Family Members for high Lp(a)

People often ask:

What should my family members do?

Each family member related to you by blood can be screened for elevated Lp(a) by making an appointment with their health care provider or with a lipid specialist and asking for a blood test for Lp(a). They should also plan on bringing information about your diagnosis of high Lp(a) and other family history of heart disease and stroke to their appointment. Because your family members may have health care providers who are not familiar with Lp(a), bringing some background material with them from the Family Heart Foundation website might also be helpful.

How is FH diagnosed?

Elevated Lp(a) is measured with a simple blood test, but it is important to know that at the present time there are two different methods for testing for Lp(a).  Some labs measure Lp(a) and report the results in mg/dL while others report the results in nmol/L.  So, it is important to pay attention to the units of measure.

 

UnitsNormalBorderlineHigh (elevated)
nmol/LLess than 7575-99*100* or higher
mg/dLLess than 3030-4950 or higher

Some authorities view borderline as 75-124 nmol/L and high as 125 nmol/L or higher

Over time we believe that all labs will shift to measuring Lp(a) in nmol/L but until then make sure to look carefully at your lab report.

 

 

How common is elevated Lp(a)? And are some people at higher risk for having elevated Lp(a)?

About 20% of people have “high” Lipoprotein (a) levels, making high Lp(a) the most common genetic cholesterol abnormality leading to an increased risk of early vascular disease.  And while 20% of the general population has a high Lp(a), certain groups are known to be more commonly impacted.  For example, 30-50% of people with familial hypercholesterolemia (FH) also have high Lp(a).  African Americans are known to have higher levels than Whites or Asians.  Menopause tends to increase a woman’s Lp(a) level and kidney disease may lead to developing higher levels.

It is also important to note that most of our data on Lp(a) levels comes from European countries.  The Family Heart Foundation is interested in studying levels in the more diverse United States population.

How is high Lp(a) treated?

While there is currently only one approved treatment for elevated Lp(a) called lipoprotein apheresis, other therapies are in clinical trials right now.  If someone has elevated Lp(a), it is crucial to make sure they manage any other cardiac risk factor such as high blood pressure, high LDL cholesterol and diabetes. It is important that they eat a heart healthy diet, get regular exercise, avoid excess weight and smoking.

Where can I go for support?

The Family Heart Foundation has developed tools and resources to help individuals and family members impacted by elevated Lp(a), including diagnosis and community support tools. The Family Heart Foundation can also refer you to a specialist that is an expert in diagnosing and managing elevated Lp(a). You can find more information at www.FamilyHeart.org, through email at info@thefhfoundation.org or by calling 626-583-4674.