logo

Serving the HCM Spectrum Disorder Community Since 1996

Share Your Story: Carmina Taylor

     This is the story of not one, but two people impacted by hypertrophic cardiomyopathy (HCM).  Carmina Taylor, a former public health heart disease educator, and her son DJ.   Sadly, DJ died of a sudden cardiac arrest and upon autopsy was diagnosed with HCM.   Although Carmina does not have HCM, the death of her son has moved her to advocate for student athletes with potential undiagnosed heart problems. However, her contributions to cardiac disease awareness efforts started well before the unfortunate death of her son, and Carmina is actually a former heart disease educator of public health in Pennsylvania.
      After DJ’s death at age 17, on May 8, 2009 both Carmina and her ex-husband were genetically tested only to discover that her ex-husband was the carrier of a known HCM gene.  Carmina’s younger son did not have the genetic marker for HCM. Despite Carmina’s side of the family not having HCM she was inspired to raise awareness for cardiac disease in young athletes. Carmina’s younger son took a path similar to his mother’s by helping educate people about the issue as well.
      Carmina wants to specifically emphasize through her work two things. The first being the importance of family medical histories and open dialogue about medical conditions in a family, which can lead to proper referrals and testing for cardiac issues.  The second is the importance of having comprehensive sports physicals that actually have a chance of identifying cardiac disease. Her passion for these two methods of prevention of sudden cardiac death during sports stem from the fact that had these factors been taken into consideration they may have made a big difference in her son, a gifted athlete’s case. The loss of DJ has spurred Carmina and her younger son to raise awareness for the fact that 50% of all sudden cardiac deaths in HCM occur in young African American males during athletics.
      Carmina’s “Share Your Story” video gives insight into what it is like for a mother who lost her son to HCM and how that event caused her to feel like she “still wanted to know more and more about HCM,” which led her to finding the HCMA.