Patient Support

Hypertrophic (hyper-tro-fic) Cardiomyopathy (cardio-MY-o-pathy) 

Here are 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 years to appear or years for it to be diagnosed as HCM.

People with HCM can live a long and healthy life. Some will have few symptoms while others 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 signs or symptoms.

Remember: this disease differs a lot from patient to patient! Be careful where you seek information as not all sites have reliable information on HCM.

The HCMA offers services to those impacted by HCM. Our goals here are to help you become informed, learn how to navigate treatment, and learn about coping with the emotional impact of living with a chronic illness.

 

Now that you have learned some basics, follow this pathway:

Step One:

Breathe - You have a long road ahead in terms of learning about your condition. The HCMA is here to help in this process. You need not travel this path alone! This website and the HCMA will help guide you on this complex, sometimes overwhelming, journey.

 

Step Two:

Take your time - Please don't rush into treatment without the benefit of educating yourself and understanding your condition. You didn't just get HCM yesterday and don't need to make your decisions about treatment this moment! Ensure that you have communicated with all relatives so that they too can be evaluated for HCM

 

Step Three:

Get Educated - Read the HCMA website starting with HCM - An Overview and also visit the Facebook community. You may wish to share your story or simply read how others have handled their diagnosis and management. You are far from alone in the process.

 

Step Four:

Call the HCMA! - A membership and time on the phone with the HCMA can lead you in the right direction armed with the right questions and tools you will need to get the best care and be the best advocate you can be for yourself and your loved ones! We are available for everyone with HCM, but members do get more time on the phone.

 

Contact the HCMA

Monday-Thursday 10 am-2 pm Eastern time at 973-983-7429

 

Step Five:

Centers of Excellence - While you may have been diagnosed by a local cardiologist, it is likely that this local cardiologist sees very few HCM patients, and has probably not seen someone with the same presentation of HCM as you have. There are recognized Centers of Excellence in the USA, Canada, Europe and other places in the world that can provide more comprehensive and up-to-date care for HCM in its many presentations.

 

Step Six:

Get on with your Life! - Living with HCM can be very uneventful in terms of symptoms and activity level. The goal of the HCMA is to improve and save lives of those with HCM - it is possible to have a long life, and a life free of significant cardiac symptoms.

 

HCMA 6/2021