Pennsylvania- 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.
Hear from Pennsylvania state constituents - We are more than numbers:
Marsha had been experiencing symptoms since her 50s, but it was not until many years late rwhere she was properly diagnosed with HCM. When she told her doctor she was short of breath, they conducted exercise stress tests. They did not find anything wrong with her heart, but instead misdiagnosed her with asthma, the medication for which damaged her eyes.
Pre-diagnosis, she was frustrated by all of the things she could not do. She was afraid and embarrassed to exercise because she could not keep up. However, after she had the correct diagnosis, she felt validated and found a reason for her body's constant need for rest. The two alcohol septal ablations she had to remove her obstruction did not work and the procedures damaged the electrical system in her heart, making her 100% dependent on a pacemaker. Her heart only beats twice a minute on its own now and the pacemaker has to do the rest for her.
When she finally found a doctor that understood HCM, she was told she needed open-heart surgery to clear the obstruction and repair her mitral valve. She was told that she was about 10 days from dying if she hadn't had the surgery and was nicknamed "tough cookie" by the hospital staff for her resilience.
Like, Marsha there are up to 8,300 potentially affected constituents per EACH State Senator’s District in Pennsylvania with up to 1,300 being Hypertrophic Cardiomyopathy*
Help save us now:
HCM and many other cardiac diseases run in families. Cole grew up with a single mother because his father passed away before he was born due to complications from a kidney transplant after a heart transplant.
Cole's HCM was discovered when he was 12 years old during a routine yearly health visit. He did not understand what was happening during his diagnosis. Being a kid, he felt invincible and that he knew everything. 3 years after his diagnosis, he was told he needed an ICD, but did not want one. Only after talking to those who cared about him and a peer his age who also had one, did he decide that it would be a wise decision for him to get one as well.
This idea proved to be a good one when he received an appropriate shock six months later that saved his life.
There are up to 2,100 state constituents potentially affected with cardiac disorders per EACH House of Representative Member's District in Pennsylvania and up to 315 being Hypertrophic Cardiomyopathy*
To view the full report on the prevalence of cardiac disorders in the state of Pennsylvania: 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/