You have been diagnosed with HCM - NOW WHAT?
If you are like many people the first time you heard the acronym HCM, you had very little understanding of what they meant to you or to your family. Learning more, HCM becomes a bit complex and for some very difficult to even pronounce! So let start with the very basics.
Hypertrophic Hyper-tro-fic Cardiomyopathy Cardio-MY-o-pathy is a disease that impacts over 1 in 500 people and possibly as many as 1 in 200, as suggested by new data. This means in the United States alone between 700,000 and 1.2 million people will have HCM or over 14,000,000 worldwide.
Now that we can pronounce it and know how many people may have it, let's begin with some basic facts about HCM:
- HCM is a genetic condition – you did nothing “wrong” to get it; you were simply born with a genetic mutation that took in most cases years to appear or be diagnosed as HCM.
- HCM is compatible with a long and healthy life for many. Some will have few symptoms or may have significant symptoms.
- This site contains information on all aspects of HCM – you will likely NOT need all treatments noted here and may not have all the symptoms or signs. Remember we are all a little different. Be careful where you seek information. Not all sites have reliable information on HCM.
- Most cardiologists see very little HCM in their daily practice; therefore, the HCMA has long advocated that those with HCM should be evaluated by HCM Centers (list located on this site). The 2011 American College of Cardiology/American Heart Association Guidelines agree with this opinion.
- In the past 20 years, much progress has been made to identify those at high risk for sudden cardiac arrest with HCM, and we know that approximately 25% of HCM patients would benefit from ICD therapy – which is over 99.5% effective in responding to cardiac arrest.
- New data indicates that those diagnosed for the first time over the age of 60 have no difference in life expectancy then the non HCM population and have a very low incidence of sudden cardiac arrest.
- HCM is genetic and in most cares runs in families (even if others have not been diagnosed yet). This can create family dynamic issues that some find difficult.
- The HCMA offers services to those impacted by HCM to help them become informed and navigate treatment and the emotional impact of coping with a possible chronic illness.
- As you prepare to being this chapter of your life, we encourage you to read this page.
- Begin learning about HCM now - Start Here!