Hypertrophic Cardiomyopathy [HCM] is often diagnosed in children, usually in infancy. It is the second most common form of heart muscle disease that is known. It’s also a genetically transmitted disease. When Hypertrophic Cardiomyopathy is present, then the muscle fibers of the heart have an abnormal growth. It can affect both lower chambers of the heart, but usually affects the left ventricle by thickening the wall that separates the pumping chambers.
Facts About Hypertrophic Cardiomyopathy
1. HCM has an incidence rate of 5 per every 1 million children. It can develop in people at any age and it may or may not cause symptoms.
2. In the general population, this heart muscle disease may occur in every 1 out of 500 people.
3. 500,000. That’s the number of people in the United States that have HCM.
4. Children under the age of 12 account for less than 10% of the total known cases of this disorder.
5. It is estimated that up to 60% of children with HCM have a relative with the disease.
6. In less than 10% of patients, the disease may progress to a point where the heart muscle thins and the left ventricle dilates resulting in reduced heart function.
7. HCM is the most common cause of heart-related sudden death in people under 30 years of age. It is also the most common cause of sudden death in athletes.
8. 75% of patients with HCM do not have obstruction to the outflow of blood from the left ventricle and a loud heart murmur is therefore absent.
9. HCM has severe enough complications to lead to death in 1 out of every 10 people. 6% died suddenly and about 4% had congestive heart failure.
10. HCM is caused by mutations in any one of 12 genes and appears in 50% of individuals in each generation.
11. Mortality rates for HCM in adults are only about 1% per year and are not dissimilar to the general US adult population for all causes.
12. The mortality rate in children when HCM is present: 6%.
13. 90-95% of people with HCM will see the thickening process of their heart stop once they achieve full growth and maturity.
14. 1 in 2 women with HCM may never receive a diagnosis of their condition.
15. 10,000. That’s the number of people who are expected to die because of their HCM in the next 12 months.
16. Men and women of all ages and races can have HCM.
17. Each child of a parent with HCM has a 50% chance of inheriting the condition.
18. Genetic testing is the only reliable way to identify unaffected family members who may need to be screened for sudden death risk factors.
How HCM progresses in an individual can vary widely. Some people may have no symptoms whatsoever. Others may have very mild symptoms that are ignored. Sometimes abnormal heart rhythms can developed that increases their risks of sudden death. It is often diagnosed in infancy because children under the age of 1 often have the symptoms of congestive heart failure.
HCM can’t be cured, but it can be treated. By knowing the facts about this condition, a better treatment plan can be developed under the care of a doctor.
How Concerned Should Someone Be with HCM?
Hypertrophic Cardiomyopathy is a scary condition to have because there is the risk of sudden death. Every year there is a story or two of an athlete dying while playing the sport they love because of this condition. The idea of dropping dead in the prime of life frightens all of us – not just someone with HCM. It is not uncommon for the first symptom of this condition to be a heart attack or sudden death.
The good news is that because this condition is so common, treatments have been developed over the past few years to improve lifespans so that they are essentially equal to that of the general population. Although athletes may not be able to play their sport any more and there may be lifestyle restrictions ordered, a long and fulfilling life may often be had.
The primary goal of treatment is to avoid having abnormal heart rhythms. This may mean surgery, having a pacemaker, or promoting heart relaxation in a number of different ways. For those who have no heart-related symptoms and there is no increased risk for sudden death, then there may be no treatment recommended at all.