Victoria is a 54-year-old woman who lives in Nashville, TN. She was diagnosed with Hypertrophic Cardiomyopathy (HCM) at 16. She was asymptomatic at the time of her diagnosis. Still, because there was an extensive history of HCM on her mother's side of the family, she was recommended to be tested. Her mother, grandmother, uncle, and two of her grandmother's siblings had HCM. Victoria suspects other family members may have also had it but were never officially diagnosed.
Victoria remained asymptomatic until about six years ago when she had an episode of atrial fibrillation (Afib). Her Afib resulted in a blood clot forming in her heart. She received care from an HCMA recognized Center of Excellence (COE), underwent surgery to remove the blood clot and had a Maze procedure to treat her irregular heart rhythm issues. She says, "The team at the COE saved my life, and they continue to monitor me regularly." Victoria has since had an ablation and has had an ICD implanted. In the earlier years of her HCM journey, Victoria had difficulty finding a provider that understood HCM and how to treat it. She feels her quality of care and life have greatly improved with her COE.
“We have two daughters. We did genetic testing, and our oldest daughter (24) has the gene and has been diagnosed with HCM. Our youngest daughter (21) does not have the gene. Our oldest daughter is being monitored closely by an HCMA recognized Center of Excellence. We were prayer warriors that neither of our girls would have HCM. God had different plans.”
When asked about the Hypertrophic Cardiomyopathy Association (HCMA), Victoria said, "I am impressed with the advocacy and education the HCMA provides and am hopeful that even more advancements for patients with HCM will be made available through the advocacy of the HCMA."
Regarding the importance of peer support, Victoria states, "I am impressed with the number of people on the HCMA Facebook page. It helps to talk to people walking in the same shoes I am walking in." Victoria feels because she received a lot of support from her connections with and through the HCMA, she would like to "pay it forward." Victoria feels that sharing patient stories is essential to creating HCM awareness.
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To learn more about accessing care at a HCMA Recognized Center of Excellence, go to https://4hcm.org/center-of-excellence/.
To learn more about hypertrophic cardiomyopathy (HCM), go to https://www.4hcm.org.
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