By Justin Farris

Fighting Back Against Children’s Cardiomyopathy

September is Children’s Cardiomyopathy Awareness Month and Phosphorus is celebrating by reflecting on its collaboration with the Children’s Cardiomyopathy Foundation (CCF) over the past year. The CCF is a national non-profit organization focused on pediatric cardiomyopathy — a chronic and potentially life-threatening disease that affects the heart’s ability to pump blood through the body, sometimes leading to sudden cardiac death. Phosphorus, whose initial clinical focus was cardiovascular genetic conditions, joins the CCF in pushing toward earlier identification and treatment of cardiomyopathy so that fewer lives and families are disrupted by its devastating effects.

Children’s Cardiomyopathy Awareness Month was conceived as a way to promote public education of the signs, symptoms, and risk factors associated with cardiomyopathy, as well as earlier detection of the disease to allow appropriate medical management to take place. In addition to CCF and Phosphorus, other prominent professional organizations are observing the event, including the American Academy of Pediatrics, American Heart Association, Centers for Disease Control and Prevention, National Association of School Nurses, National Athletic Trainers’ Association, and the Sudden Cardiac Arrest Foundation.

Cardiomyopathy is the leading cause of sudden cardiac death in the United States, from which approximately 2,000 people younger than age 25 die every year in the United States. It is also the leading cause of heart transplants in children older than 1, with about 40 percent of disease cases ending in transplant or death. Cardiomyopathy symptoms can include difficulty breathing, fatigue, fainting, light-headedness, chest pain, heart palpitations, and swelling of various regions of the body. Competitive and contact sports can be particularly dangerous for sufferers, and in addition to exercise restrictions, management options may include dietary adjustments, more frequent doctor visits, daily medications, and possibly surgical intervention.

Family cardiac history awareness and genetic testing, such as that facilitated by Phosphorus, is essential in preventing premature cardiac death. Lisa Yue, CCF’s founding executive director, began her advocacy work due to an undiscovered family gene for cardiomyopathy that ended in tragedy for both of her children. Determined to help other families avoid similar circumstances, Lisa and her colleagues have since grown CCF into a global community of families, physicians, and scientists focused on improving diagnosis, treatment, and quality of life for children affected by cardiomyopathy. CCF has committed more than $11 million to research and treatment initiatives and continues to push for increased, education, research, and awareness.

Julie Skinner of Pennsylvania (pictured with family, above), who lost her 1-month-old son, Noah, after he underwent a heart transplant due to cardiomyopathy, states, “Children’s Cardiomyopathy Awareness Month shines a light on an unrecognized heart condition that requires more research to find better treatments. A new heart should not be the only option for kids with cardiomyopathy.” Similarly, Lisa Yue states that “Cardiomyopathy is difficult to detect, and if not diagnosed, the consequences can be devastating for a family. We urge physicians, nurses, coaches, teachers, and community leaders to unite this September to educate the public on the signs, symptoms, and risk factors for cardiomyopathy.”

You can participate in Children’s Cardiomyopathy Awareness Month along with families across the U.S. by joining Team CCF for its third annual Walk for a Cure on September 17 in various locations across the nation, by planning a walk in your hometown, or by supporting as a virtual walker. Visit CCF’s Walk for a Cure webpage for more information and visit their Children’s Cardiomyopathy Awareness Month webpage for other ideas on how you can show your support, along with weekly activity calendars.

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