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.
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
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
What is Lipoprotein(a)
and what makes it bad?
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
Lipoprotein(a) is the
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).
have the potential to save a lot of lives with 3 easy
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.
and Happiness Always
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