Deborah was diagnosed with nonobstructive HCM in February 2020 at the age of 28 during a yearly checkup when her doctor heard a heart murmur. After months of back and forth at the onset of the COVID-19 pandemic, she was advised by more than one HCM specialist to have an S-ICD (subcutaneous internal cardioverter-defibrillator) implanted because of scarring on her heart. She describes this decision as one which was particularly challenging for her because of her lack of symptoms. However, after weighing her options and with the support of her family, Deborah decided that obtaining the S-ICD was the best choice for her and so she did in December of 2020.
Deborah found that a lack of information about HCM as a spectrum disease caused her a lot of confusion. Because HCM affects everyone differently, not knowing more about the course of the illness concerned her the most. She explains that with her diagnosis came a mental health crisis. She describes feeling extreme anxiety from not understanding where she fell on the spectrum and having to make a decision about the defibrillator. She says that therapy helped her tremendously in making sense of what happened during that time of her life. Deborah also found that there was not a lot of data and/or studies that focused on young women with HCM.
Since having her S-ICD implanted, Deborah says she lives her life without limitations. She loves to travel, exercise, and socialize with her friends and family. She explains that airport security personnel are usually confused by the fact that she looks young and healthy and has a defibrillator. She often has to educate them as to what it is and what it does. In these situations, she wishes there was more training and awareness about how security personnel should search those like her with defibrillators and pacemakers. It can be quite stressful to divulge something so personal to a complete stranger. However, she has learned to not let it get to her and rather tries to find the humor in it whenever possible.
Deborah is able to live to the fullest extent possible knowing that she can manage her HCM. She hopes to advocate for there to be more data and a greater focus on young women, pregnant women, and long-term studies of their life and disease progression.
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To learn more about hypertrophic cardiomyopathy (HCM), go to https://www.4hcm.org.
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