Madrid, Spain — The story of Manu Pena is a testament to resilience and the power of community, as chronicled in a heartfelt book published by the Spanish Association of Hypertrophic Myocardiopathy (AEMCH). Entitled “My heart speaks,” this book features the personal narratives of 13 individuals living with a serious heart condition that affects one in 500 people in Spain, many of whom are unaware of their condition.

The AEMCH is hosting a national awareness day this Friday at the Vigo Auditorium, with the support of Vigo’s mayor, Abel Caballero. The event is sponsored by the biopharmaceutical company Bristol Myers Squibb (BMS). The initiative aims to educate the public about hypertrophic myocardiopathy (MCH), a condition that can lead to sudden death in young individuals if left undetected.

Since its inception in 2023, the book has been a driving force behind initiatives like “My heart speaks in hospitals,” which fosters collaboration between medical professionals and patients with MCH and their families. The book’s impact extends to educational settings, with “My heart speaks in schools” programs teaching students cardiopulmonary resuscitation (CPR).

“Today is presented on this day ‘My heart speaks in schools’ that will explain students from different schools and institutes how to make the cardiopulmonary resuscitation maneuver,” says the president of the AEMCH, Susana Portela, in an interview with Servimedia.

Manuel Pena, a 62-year-old native of Vigo, has a profound understanding of resuscitation techniques and defibrillators. Diagnosed with non-obstructive hypertrophic congenital myocardiopathy at just 11 days old, his parents were told he might not survive beyond a few weeks. Despite the dire prognosis, Manu has lived a full life, currently carrying a ventricular defibrillator that has saved his life twice.

“My parents told them that I could endure eight days, one month or two maximum because my deformed heart could not endure,” he recalls for Servimedia.

Hypertrophic myocardiopathy is a hereditary cardiovascular disease that causes structural and functional alterations in the myocardium. Common symptoms include fatigue, difficulty walking, dizziness, and chest pain. Manu’s childhood was marked by a lack of understanding about the disease, leading to a “sad and lonely childhood and youth.”

“I had a sad and lonely childhood and youth.”

At age seven, Manu began receiving treatment at the Madrid Hospital de La Paz. In 2013, he suffered an angina that revealed a cardiac arrhythmia. He now carries a defibrillator and takes 12 daily pills. The darkest period of his life came at age 45 when he had to stop working due to a 58% disability. “I came down, I lost the desire to live and started self-lingering. I felt useless,” he recalls. Fortunately, his wife and psychological therapy helped him overcome suicidal thoughts.

“I left behind the ideas of ending my life and now I just focused on the fight.”

The book has become a valuable resource for many, providing relatable stories and raising awareness about the disease. “We have met people who, reading the book, identify with many of the stories, who have ancestors who have suddenly died or symptoms that have not given importance and then show their concern,” says Soledad Portela, the president of the AEMCH.

Hypertrophic myocardiopathy affects over 97,000 people in Spain and is a leading cause of sudden death in children under 35. Early detection is crucial, and the disease often presents with common symptoms like chest pain, fatigue, and syncopes. Roberto Barriales, coordinator of the Family Heart Disposal Unit in the University Hospital Complex of A Coruña (Chuac), emphasizes the importance of recognizing these symptoms early.

“To obtain an early diagnosis of the disease, you have to know it well.”

Roberto Barriales

Manu’s family history is a stark example of the hereditary nature of the disease. His father, grandfather, and uncle also have myocardiopathy. Manu is currently participating in an international clinical trial, hoping for new treatments that could improve his condition. “My is ‘an injured heart that continues to fuck’,” he writes in the book, reflecting his ongoing struggle.

In the United States, similar initiatives are underway to raise awareness about hypertrophic myocardiopathy. Organizations like the Hypertrophic Cardiomyopathy Association (HCMA) work tirelessly to educate the public and support research efforts. The HCMA’s “CPR Anytime” program, for instance, teaches CPR to high school students, ensuring that more people are equipped to handle cardiac emergencies.

Recent advancements in medical technology and research have provided new hope for patients with MCH. For example, the development of implantable cardioverter-defibrillators (ICDs) has significantly improved survival rates for those at risk of sudden cardiac death. Additionally, ongoing clinical trials are exploring new medications and surgical techniques that could offer better outcomes for patients.

Despite these advancements, challenges remain. The lack of awareness and understanding about MCH can lead to delayed diagnoses and inadequate treatment. Public health campaigns and educational programs are essential to bridge this gap. In the United States, initiatives like the “Heart Health Awareness Month” in February aim to educate the public about various heart conditions, including MCH.

The story of Manu Pena and the efforts of the AEMCH serve as a powerful reminder of the importance of awareness, early detection, and community support. As we continue to advance in medical research and technology, it is crucial to ensure that these advancements reach those who need them most. By fostering a culture of awareness and support, we can create a future where conditions like hypertrophic myocardiopathy are better understood and managed, saving countless lives.