Tennessee - The heart of the matter
the hcm act will help identify Cardiac Health issues in patients with a spectrum of Diseases including Hypertrophic cardiomyopathy
Sudden cardiac death (SCD) is a sudden, unexpected death caused by loss of heart function (sudden cardiac arrest). Sudden cardiac death is the largest cause of natural death in the United States, causing about 325,000 adult deaths in the United States each year.
Multiple conditions and risks can make children prone to sudden cardiac arrest (SCA) or sudden cardiac death (SCD) as well as other complications of heart disease. To date, the focus has mainly been only on screening student-athletes.
Victoria Collins
Hear from a Tennessee State constituent - Help save us now:
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.
By the numbers:
One of the disorders in the spectrum is Hypertrophic Cardiomyopathy which is often misdiagnosed or worse yet - overlooked until it is too late.
But with more attention focused on this problem, we can improve the diagnosis delay.
Like Victoria, there are close to 6,700 Tennessee State constituents potentially affected with cardiac disorders per EACH State Senator’s District, with up to 1,040 being Hypertrophic Cardiomyopathy*.
There are up to 2,200 constituents potentially affected with cardiac disorders per EACH House Delegate in Tennessee with up to 350 being Hypertrophic Cardiomyopathy.
The HCMA has many members from Tennessee. They share a deep understanding of the benefits of childhood screening and early diagnosis.
To view the full report on the prevalence of cardiac disorders in the state of Tennessee: Click here
Please, listen to our patient stories, and take action to support the HCM Act. Draft legislation is available for review: https://4hcm.org/health-cardiac-monitoring-act/