Patient Toolbox » FAQs
THIS INFORMATION IS PROVIDED BY THE CANADIAN HEART PATIENT ALLIANCE, A NONPROFIT ORGANIZATION OPERATED BY PATIENTS FOR PATIENTS TO PROVIDE INFORMATION, SUPPORT, AND ADVOCACY TO PROMOTE THE HEALTH OF THOSE LIVING WITH HEART-RELATED RISKS OR CONDITIONS.
If FH is so “common” why haven’t we heard very much about it?
For a long time, the treatment for high cholesterol, whether it was inherited or caused by other factors, was pretty much the same: reduce fat in your diet, exercise regularly, and take medication if necessary. And for the past 30 years, pretty much the only medication was a statin. The good news is that statins have worked reasonably well in reducing high cholesterol, whether familial or non-familial.
So, why is important to know whether your high cholesterol is FH, or not?
A person with FH has very high cholesterol level, even before birth. This means you have a high risk of narrowing or blocking of blood vessels (also known as atherosclerosis). If left untreated, the risk of stroke, heart attack, or heart disease is 20 times greater than the general population. With a healthy lifestyle and treatment, most people with FH can expect to live a near normal life span.
What are the chances of passing FH to your child?
If you have FH, there is a “1-in-2” chance that your child will have FH. Unfortunately, FH is often undiagnosed, undetected, and untreated in children. If both parents have FH, there is an additional “1-in-4” chance of having a child with Homozygous FH. If you have FH, you should have your child tested between two and ten years of age – or as early as possible after that.
FH can cause high levels of LDL-C starting at an early age. In addition to ensuring your child develops healthy eating habits and regular exercise, some children as young as 8 years of age may benefit from medication (usually statin).
What are risks if your (bad) cholesterol level remains high?
You already know that individuals living with FH are at higher risk of having cholesterol build up in the blood vessels. Over time, cholesterol-rich plaque in the arteries may harden and limit the flow of oxygen-rich blood to the organs and other parts of the body. The plaque may cause Atherosclerotic Cardiovascular Disease (ASCVD), which includes stroke, heart attack, and damage to peripheral arteries (in the legs).
What is the risk of ASCVD if your high cholesterol is not due to FH?
High cholesterol may be due to other factors. The good news is that LDL-C can be lowered. Talk with your healthcare professional about other risk factors that may interact with high LDL-C to affect your overall risk of ASCVD, or heart disease. These include age, sex, smoking, and high blood pressure.
When should my child be tested?
If you have FH, by the time your child is 10 years old, he or she should have their cholesterol levels tested. They should also be DNA testing if a faulty gene has been identified in you or your child’s other biological parent.
If your child is under 5 years of age: Have his or her cholesterol levels tested if they have yellow patches of cholesterol deposits on their skin or if both their parents have been diagnosed with FH.
Genetic Non-Discrimination Act: What is it and how does it affect me and my family?
The Genetic Non-Discrimination Act was passed into law on May 4, 2017.
- It prohibits genetic discrimination.
- It also prevents any one from having to take a genetic test or disclose the results of a genetic test as a condition of providing goods or services, or entering into a contract.