Diagnosed With FH? Talking To Your Family About It Is Crucial
If you've been diagnosed with familial hypercholesterolemia, or FH, your doctor has undoubtedly told you
that this is a genetic disease that can be passed down through the generations. In fact, if either one of
your parents had FH, you have a one in two chance of having this disorder. Unfortunately, your parents or
grandparents may have had it but were never diagnosed. In past generations, the first sign of a problem
was often a heart attack or other cardiac event that caused severe health problems or even death. Even
today, over 75% of people who have familial hypercholesterolemia aren't diagnosed until after heart
disease has become a concern. Caught early on, treatment could have prevented later heart problems.
Because it is so often missed, it's crucial to talk to your family about it and encourage them to get tested
for this genetic disease.
Explain Clearly And Stick To The Facts
Telling anyone that they may have a genetic disease is always difficult. It's easiest to give them a simple
outline of what familial hypercholesterolemia is, the fact that you have it, and why it's so important for
them to get tested. Reassure them that having familial hypercholesterolemia doesn't mean they can't
have a normal life. Explain to them that with diet, exercise and the proper medication, they can
significantly reduce their cholesterol and their chances of developing heart disease later in life.
Talk About Common Indications Of FH
Some family members may already be showing signs of familial hypercholesterolemia and not realize it. If
their LDL levels are higher than 190, or 160 in teens, they may have FH. Additional indicators include the
onset of heart disease, including clogged arteries and heart attacks, before age 55 for men and before
age 65 for women. There are also minor physical indications such as light colored, raised fat deposits
around the eyes, elbows, hands or ankles or white rings in the iris of the eye. If anyone has these
symptoms, they should discuss them with their doctor and have appropriate blood tests done to
determine their cholesterol levels.
Understanding How FH Is Diagnosed
Some family members may be worried about getting medical tests done. If you explain to them that
diagnosing the condition is relatively easy and not at all invasive, they will be more likely to seek medical
screening. In most cases, a diagnosis is determined using three factors: a family history of heart disease,
a simple blood test and a physical examination. At that point, if your family members are told that they
have FH, they may want to consult with a lipids specialist. This is a doctor who specializes in the
treatment of cholesterol diseases.
One of the most difficult aspects of talking to your family about familial hypercholesterolemia is the danger
of frightening them too much. Reassure your family members that this is a treatable condition and that it
doesn't have to interfere with a normal lifestyle. They may also be concerned about testing their children.
Make sure they understand that familial hypercholesterolemia can be found even in very young children,
and stress that early diagnosis can mean better treatment options and a better chance of preventing heart
disease later in life.
Above all, be calm, answer their questions and support them as they go through the process of being
tested for FH. Having a network of family support can be just as important as the right medications and
lifestyle changes when dealing with familial hypercholesterolemia.
For families with familial hypercholesterolemia, the FH Foundation provides support, education and
advocacy. If you or a family member has been diagnosed with FH
(http://www.thefhfoundation.org/learn/#how-common-fh), register for the FH Foundation's free newsletter