It’s giving up my long runs.
It’s having to change careers.
It’s learning to keep moving forward.
Your diagnosis can affect more
than your heart
Algenis,
Diagnosed with HCM in 2022
Actual consented person with HCM.
FAMILY IMPACT
Hypertrophic cardiomyopathy (HCM) can affect your family
Because HCM can be caused by a genetic mutation that runs in families, it’s important you share your diagnosis with family members who may be affected, such as parents, siblings, and children. They may be at risk of developing HCM.
Some people may find their diagnosis hard to discuss with family and may feel fear, shame, and guilt.
Some parents may blame themselves for passing down HCM to their child
Some people may feel unsure of their reproductive future and starting a family
Having these conversations is important. By sharing your symptoms and diagnosis journey, you can motivate others to act earlier and see a specialist for more testing.
If you find it difficult to share your diagnosis, you are not alone.
It is important to remember we have no control over our genes. Speak to your cardiologist or a genetic counselor if you need support.
Sharing Your Diagnosis
Tips for sharing your HCM diagnosis
When telling loved ones, friends, and others about your diagnosis, share as much or as little as you want. This information can help friends and loved ones understand how your diagnosis has impacted you. It can also be helpful for family members who may be affected by HCM to identify with some of the symptoms you experienced and understand that living life with HCM is manageable.
Here are a few things you may wish to share:
Symptoms you've experienced
- How you felt
- Activities you may have had trouble with
Misdiagnoses given
- If you received a misdiagnosis and what it was
- What treatments you received related to any misdiagnosis
Tests conducted
- Which tests you did
- The number of tests
- How long they took
Feelings you’ve experienced
- About your HCM journey
- How you’re feeling now
Find Peer Support from Mended Hearts®, a foundation dedicated to providing peer-to-peer support for all heart patients and their families.
Join a Discussion Group at the Hypertrophic Cardiomyopathy Association, an organization dedicated to improving the lives of people living with HCM.
Relationship Impact
Talking about HCM with loved ones
Sharing your diagnosis can help others understand what you’re going through and give you the support you need.
It may be hard for people in your life to understand how HCM affects you, especially if you "look healthy."
It may help if you explain not only what you cannot do, but also offer alternative activities or plans that you may feel more comfortable doing.
In addition to how HCM might affect you physically, some other areas you may want to discuss include:
How HCM makes you feel emotionally, including if you feel lonely, anxious, or misunderstood
Whether HCM has had an impact on your professional life, including goals and your career path
If HCM has made you feel differently about stating a family, or if it has complicated your relationship with your parents or children
Quality of Life
HCM can affect your quality of life
Not everyone with HCM will have the same physical symptoms and the impact they have on your life may be different, too.
People living with symptoms of HCM may tend to restrict their physical activity. Doing this can increase the risk of:
Cardiovascular disease
Depression
Excessive weight gain
Loss of autonomy
Loss of self-identity
Whole-Person Burden
Hear how HCM can affect people’s quality of life—physically, emotionally, and socially. See how others are managing.
Although inactivity is common, HCM guidelines recommend against routinely restricting vigorous physical activity and competitive sports in most people living with HCM.
- It's important to work with your cardiologist to determine a safe and healthy level of physical activity for you
- Sexual health can be impacted by heart conditions like HCM. Don't hesitate to discuss with your doctor if your sexual health is affected
Your diagnosis does not mean you are alone
There are support groups and advocacy organizations for people living with HCM where you can connect with others and find additional help you may need.
Explore support organizations
Sign up now to receive your free HCM Information
Kit and learn about the HCM Champions Program
Social & Emotional Impact
HCM can affect your emotional and social well-being
Many people living with HCM report:
Feeling
anxious
Feeling
depressed
Impact on their
family lives
Impact on their
work lives
Impact on their
social lives