Be Light and Healthy

Big Hearts

Posted on: June 12, 2011

 “A person’s world is only as big as their heart.”  Tanya A. Moore

Modern society has conditioned many of us to follow our heads not our hearts.  The persuasive power of the voices in our heads is stronger than the gentle yearnings of our hearts.  Sometimes we cannot interpret the callings of our heart in the logical world we live in so we ignore them.  I believe we all came into this world with a unique set of gifts to share with others, and the key to unlocking those gifts lies in our hearts.  The soul and the essence of life are represented by the heart.  The heart is the major energy center of the body from which the life force flows to the entire body.  Our hearts connect our spirits to our physical bodies.  Its healing energy is powerful and encompasses profound wisdom disseminated to us via our intuitions.  Big hearts symbolize people overflowing with kindness and love for others. 

Did you know that 1 in 500 people in the general population is literally walking around with a big heart?  Hypertrophic Cardiomyopathy (HCM) is the most common genetic heart disease and affects the heart muscle resulting in an enlarged heart. HCM is more common than cystic fibrosis, multiple sclerosis, muscular dystrophy, and ALS.  Individuals with HCM are at increased risk for sudden cardiac arrest, and it is the leading cause of sudden death in athletes.  During the last 50 years HCM has been known by 75 different names.  It is a disease that masquerades as various conditions encompassing a broad spectrum.  Commonly misdiagnosed as an innocent heart murmur, asthma, panic attacks, or depression, it can take years for someone to get correctly diagnosed and treated.  Symptoms may include shortness of breath, chest pain, fatigue, palpitations, lightheadedness, near-fainting, and fainting.  There are people with HCM who have no symptoms; whereas, extreme cases (less than 2%) require heart transplants.  The majority of patients are somewhere in between.  Possible treatments include medication and lifestyle modifications, ICDs (Implantable Cardioverter Defibrillators), or various heart surgeries.  With proper care and lifestyle modifications, the vast majority of people with HCM are able to live long, fulfilling lives. 

The Hypertrophic Cardiomyopathy Association (HCMA) is an organization that provides support to patients, families, the medical community, and the public as they endeavor to increase awareness and promote research.  Lisa Salberg, the founder of the HCMA, was diagnosed with HCM at the age of 12.  Her effect on the world has truly become as big as her heart.  When Lisa shares the chart outlining her family’s medical history, it is evident that HCM proliferates every generation.  In 1995 her sister, Lori Flanagan, died from the disease at the age of 36.  Prior to Lori’s death, she and Lisa had discussed a need for HCM patients to network and share information.  Soon after Lori died, Lisa founded the HCMA. 

Lisa intimately knows HCM from multiple perspectives.  In addition to being diagnosed at a young age, she is also the daughter, mother, and sister of individuals with HCM.  Lisa has created an organization that provides information and support to people grappling with a diagnosis that is often misunderstood.   She has worked tirelessly to raise public awareness.  Because HCM is often undiagnosed or misdiagnosed, awareness of the symptoms and family history is critical in preventing sudden cardiac arrest.  In an effort to identify student athletes and others at risk, a Sudden Cardiac Arrest Risk Assessment Form is available on the HCMA’s website (www.4hcm.org).  Knowledge of HCM is sorely lacking even within the medical community.  Seeing a cardiologist who specializes in HCM increases the chances of obtaining a correct diagnosis, and the HCMA has worked with the medical community to establish HCM Centers of Excellence in the United States.  The HCMA advocates for patients when insurance appeals are necessary, and the message boards enable people around the world to connect with each other and share their experiences.  During the last year an average of 18 newly diagnosed patients a week contacted the HCMA for advice and guidance.  Often they are parents confronted with their worst fears, the health of their children.  The HCMA also works to promote legislation that impacts those with HCM or at risk for it.

Earlier this month the 14th Annual Meeting of the HCMA was held in New Jersey.  The annual meeting is a unique event where attendees include patients, their loved ones, and members of the medical community.   Attendees have the opportunity to listen to and meet world-renowned HCM cardiologists, surgeons, and other medical professionals including researchers and genetic counselors.  The most current information regarding treatment and research initiatives is available.  All of the medical professionals are approachable and answer questions.  In addition, it is a chance to share information and network with people in similar circumstances. 

When faced with an unforeseen situation, it is natural to wonder why.  A health challenge can be an unexpected reason to reflect on our mortality and assess our priorities and the direction our life has taken.  Each of us encounters challenges on our path as we journey through life.  We can choose to perceive these situations as misfortunes or opportunities.  Initially, the silver lining may not be obvious; however, the unanticipated bumps in the road may be hidden opportunities to detour from our current paths or adjust our priorities.  We may not understand why some things happen, but instead of fiercely resisting, we can choose to ponder the new path that lies before us and go with the flow.  If we choose to accept them as gifts with the potential to benefit us and others, we are more likely to discover our own unexplored potential.

Lisa has chosen to use the experiences gained from the adversities encountered by herself and her family to the benefit of thousands of patients and their families.  Her heart has truly provided an opportunity for her to share her unique gifts with the world, and her world continues to expand as the HCMA grows.  By choosing to pursue a path inspired by the untimely death of her sister and sharing her heart as well as her unique set of gifts with the world, Lisa has saved lives.  By harnessing the energy of the challenges on her path, she helps thousands of people navigate a complex disease, obtain appropriate care, and increase the quality of their lives.  She is the heart of the HCMA and her life force flows to every facet of the organization.  The ultimate goal of the HCMA is to eradicate the disease.  With the amount of heart healing energy and passion Lisa generates for her mission, there is no limit to what can be accomplished.     

I invite you to visit the HCMA’s website (4hcm.org).  If you or someone you know has any of the symptoms associated with HCM or a family history of sudden death, please review the Sudden Cardiac Risk Assessment Form.  It could save someone’s life.  In addition, I encourage you to consider the unforeseen situations encountered on your path and look for the deeper meaning.  Could they be guiding you to your unexplored potential?  In addition, I invite you to forward this blog to your friends and sign up for weekly e-mail updates at www.belightandhealthy.com to get informed and inspired to Be Light and Healthy.  When you sign up, you will receive an e-mail requesting you confirm your subscription.  After you confirm, you will begin receiving weekly updates.

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