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How Do I Tell the Family?
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How Do I Tell the Family About this Genetic Risk for Heart Disease and Stroke?

      You have found out you have high Lipoprotein(a)[(Lp(a)] and you are faced with the decision to tell the family about this inherited risk for early coronary heart disease, atherosclerosis, arterial thrombosis and stroke by promoting the formation of atherosclerotic plaques in the arteries.  Below is a letter one of our patient advocates sent to his family that you might find it helpful.

Gil’s Letter to his Family

 What every family should know about their genetic risk of heart disease.

     I’m not overweight, I’m not a smoker and as a physician, I’m well aware of poor lifestyle habits that could put me at risk for heart disease.  However, thanks to family history and genetics, my risk of an early cardiovascular (CV) event is higher than most. 

     Both of my parents had bypass surgery: my father at 54 and again at 79, and my mother at 79 years old. One brother had two strokes in his 40's and my other brother just had bypass at the age of 52. While there are some elevated cholesterol levels in the family, nothing that is out of the ballpark versus lots of other people and families – so why have we experienced so many cardiovascular problems?

The answer: Lipoprotein(a). 

It’s not a Cholesterol Problem – It’s a Lipoprotein Problem

     Produced by every cell in the body, cholesterol is used by the body to make bile acids and become part of cell membranes and hormones.  Most people are familiar, with LDL (Low Density Lipoprotein) and HDL (High Density Lipoprotein), which are often referred to as “bad” and “good” cholesterol.  However, when doctors discuss cholesterol and heart health, they are not concerned about cholesterol itself, but rather the structures that carry cholesterol through the bloodstream, called lipoproteins. In reality, all cholesterol is the same; it is the lipoproteins that are different. The lipoprotein they don't typically talk about or test for is Lipoprotein(a).

     When you get your cholesterol checked, what are routinely measured are your Total cholesterol, LDL-Cholesterol and HDL-Cholesterol and non-HDL-Cholesterol.  

What is Lipoprotein(a) and what makes it bad?

     Lipoprotein(a), also known as Lp(a), is currently considered to be the strongest genetic risk factor for coronary heart disease. Lipoprotein(a) has been confirmed as a risk factor for coronary heart disease, atherosclerosis, arterial thrombosis and stroke by promoting the formation of atherosclerotic plaques in the arteries.1,2  More than 63 million Americans, or one in five, have high levels of Lp(a)1 and most don’t know they have it.

Lipoprotein(a) is the redheaded lipoprotein.

     It's known that redheaded people are significantly more vulnerable to melanoma. We often hear tragic stories about a young redhead diagnosed with melanoma that has already spread. Just as redheads do not bring the risk of melanoma upon themselves, neither do people with elevated levels of Lipoprotein(a).  This is not a diet or lifestyle issue – it is genetics and we need to work harder to give people the tools they need for improved recognition, prevention and vigilance.

     In the 2013 ACC/AHA Guideline on the Treatment of Blood Cholesterol to Reduce Atherosclerotic Cardiovascular Risk in Adults, elevated levels of Lp(a) are associated with an increased risk for a premature cardiovascular event.  In 2010, the European Atherosclerosis Society recommended screening for elevated Lp(a) as a priority for reducing cardiovascular risk. 

Did you know that up to 120,000 cardiovascular events could be prevented every year with a simple blood test?

     Lp(a) concentrations can be measured by a simple blood test, but it is not included in most standard lipid panel tests.  Recent studies show that the current cholesterol guidelines miss 8% of people who have a cardiovascular event whose only risk factor is high Lp(a).3 When you consider 1.5 million CV events each year in the U.S., that equals 120,000 potentially preventable events if we more proactively screened for Lp(a).

 

We have the potential to save a lot of lives with 3 easy steps:

1. Recognition: Test everyone once in their lifetime for high Lipoprotein(a) to get an accurate prediction of your risk.

2. Prevention: If you have high Lp(a) work with your healthcare provider to develop an aggressive prevention plan for cardiovascular disease.   There are now some promising therapies in development to lower Lp(a). 

3. Vigilance: Educate those with high Lp(a) levels so they may be more aware of stroke and heart attack signs and symptoms

     I encourage all families with any risk of heart disease to learn more about Lp(a), join the Lipoprotein(a) Foundation at www.lipoproteinafoundation.org and also see what resources are available through their family practice doctor, lipidologist or cardiologist.  Above all, take charge of your cardiovascular health and talk to your doctor.

Health and Happiness Always

Gil

 

1 Kronnenberg F., Uterman G. Lipoprotein(a): resurrected by genetics. Internal Medicine J, 2013, 273;6-30

2 Nordestgaard F., Chapman J, et al. Lipoprotein(a) as a cardiovascular risk factor current status. European Heart J. 2010;31,2844-2853

3 Mortensen M, MD, PHD, Afzal S, MD, PHD et al. Primary Prevention with Statins.  ACC/AHA Risk-Based Approach Versus Trial-Based Approaches to Guide Statin Therapy.

 

 

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