Sabrina Cuddy • September 26, 2023
It’s Emotional Wellness October!

If you’re  Newly Diagnosed  with HCM or have been living with symptoms for a long time, you may sometimes struggle with the emotional aspects of this condition. The HCMA is here to help you! Here are some of the resources we have available:

Twice a month, we offer  Emotional Support Discussion Groups  via Zoom. These sessions are a great place to learn coping skills, talk about your feelings, and meet your peers so you know you aren’t alone! You can also find Zoom groups on our calendar for other topics in HCM that may help you feel better.

From our Big Hearted Warriors Unite Tour, during the 3/10/22 session with  Ascension St. Thomas Heart , there is a video segment by Dr. Ronald Salomon titled “Coping with HCM – Building Resilience.” Dr. Salomon is a psychiatrist working within the HCM Center of Excellence, which gives him a unique understanding of the challenges of those living with HCM. This segment starts around 1 hour 26 minutes into the video.

If you aren’t already a member of our  Facebook private group , consider joining! Simply request to join the group and answer the 4 questions. Only those with HCM or close family members are allowed to join, so you can get the perspective of others living with HCM and be supported by your peers.

If you need more emotional health care, don’t be embarrassed to talk to a therapist. It isn’t a weakness that you need a specialist to care for your heart, and it isn’t weak to find a specialist to care for your mind! Ask your medical care team if they can recommend a mental health therapist specializing in HCM or chronic illness. You may need to research if they don’t know one in your area. You may also need to try several therapists to find one that clicks with you – that will make a difference in how much they can help you!
As a patient advocate, I believe that treating the whole person is essential, which means your mind, emotional state, and physical symptoms. One example is how you can increase an arrhythmia by becoming anxious when it happens. Of course, it’s natural to be anxious when your heart does something unusual, but through mindfulness, relaxation, and other coping techniques, you can avoid making yourself feel worse. You can balance your emotional state by educating yourself about when the feelings in your body are important signals to pay attention to and call your doctor about and when those feelings are things you can safely ignore. The  HCMA  can help you become educated in general, and talking with your medical team can help you become educated about your individual condition.

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June 2025 is upon us and with it comes a great deal of mixed emotions for me and the basis of the founding of HCMA. Origin stories how things began has become quite a topic for Disney movies and marvel comics. But today I'm going to talk about origin stories from the HCMA. The services of the HCMA are based upon lived experience from real patients seeking better care and a chance of a future. Why are bases of intake and navigation calls? They are the starting point for deeper understanding of the condition and access to care. Because on a June day in 1995 my sister, who was 36 years old at the time, was in a situation we could never have predicted. And, at that moment in time, having more knowledge and understanding of the disease could have played important roles in decision-making prior to her cardiac arrest and after. On June 6th, 2025, my sisters held a baby shower for me excited at the prospects of their new niece coming in July. June 12th 1995. My sister would have a cardiac arrest and we would wait for her to wake up. Like any family who has waited for a cardiac arrest victim to wake up or not, nothing could have prepared us for what lay ahead. June 16th, 1995 my sister was pronounced dead and in the early morning hours of June 17th her organs were procured and given to others in hope of saving their lives. On Father's Day a wake was held. The following day was her funeral. I don't think I will ever forget the look on my father's face as he stood next to his daughter's coffin on Father's Day. But I had not considered, on that day, and because my brain couldn't handle it, was that when my father was 18 years old, he stood next to his father's coffin on Father's Day, which also should have been his graduation day. On June 21st, 1953 my grandfather had died from a sudden cardiac arrest at the age of 43. 17 years ago my father also passed on June 7th, 2008. On June 16th, 1990, a few short weeks after my wedding, I thought I had a headache and that was unusual. It was actually a stroke, one of a series of strokes that came after I had received dental work without antibiotics and developed endocarditis and multiple clots formed throughout my body. June always makes me a little nervous…and it reminds me of the fraility of human life. As with any other month of the year, good things in June have happened for our family as well, including my sister and brother-in-law's wedding and her birthday. Happy anniversary, Lynn and Kevin! It was also my mother's birthday and on my mother's birthday in 1976, my life was made better by my new neighbors and lifelong best friend coming into my life. It's hard to believe it's almost 50 years ago. So on this June 2025 this month's message will not be about the places that I've been in the past month or where I'm going next month. It will be to remind you all that this community was built because of one special woman. Her name was Lori and she was my sister and she will always be at the heart of our big-hearted community. I miss you Lori! Today and always. Please take a look at our calendar of events for June and July. We have some great programs coming up including an in-person event in Seattle. I hope to see many of you there. Make some good memories this June Sincerely, Lisa
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