Living with hypertrophic cardiomyopathy: a patient's perspective

Wendy Borsari1,2, Lindsay Davis3,2, Eric Meiers4,2

  • 1Medical consultant, HCM patient, Plymouth, MA 02360, USA.

Future Cardiology
|September 17, 2021
PubMed

Insights

Hypertrophic cardiomyopathy (HCM) is a complex heart muscle disease. Patient stories reveal diagnostic and symptom management challenges, emphasizing the need for better understanding to improve quality of life.

Area of Science:

  • Cardiology
  • Genetics
  • Patient Advocacy

Background:

  • Hypertrophic cardiomyopathy (HCM) is a genetic heart muscle disease causing thickening of the cardiac walls.
  • Symptoms like chest pain, shortness of breath, and fainting are common but often misdiagnosed.
  • Current treatments focus on symptom relief, with surgery for severe cases, yet the patient experience is under-documented.

Purpose of the Study:

  • To highlight the humanistic burden of HCM through patient testimonials.
  • To illustrate the challenges in diagnosing and managing HCM symptoms.
  • To inform disease diagnosis, monitoring, and improve patient outcomes.

Main Methods:

  • Presentation of four anonymized patient testimonials.
  • Qualitative analysis of patient experiences across generations.
  • Focus on diagnostic and symptomatic management challenges.

Main Results:

  • Testimonials reveal significant difficulties in achieving accurate HCM diagnosis.
  • Patient narratives underscore the variability and impact of symptoms on daily life.
  • Insights into the generational spectrum and expression of HCM were shared.

Conclusions:

  • Patient testimonials offer crucial insights into the lived experience of HCM.
  • Addressing diagnostic and management challenges can improve patient quality of life.
  • Understanding the humanistic burden is key to optimizing HCM care and outcomes.

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