Meet Tim from Nova Scotia, whose journey of strength and perseverance transcends the ordinary. At the age of 64, he shares a profound narrative that is marked by a relentless fight against Hypertrophic Cardiomyopathy (HCM) over the last two decades.
Born with this genetic heart condition, Tim’s diagnosis didn’t come until he was 40 years old. The journey he has endured has been steeped in loss, with HCM claiming the lives of his mother, brother, and two nephews. However, from this personal sorrow springs Tim’s unwavering dedication to advocate for better understanding and treatment of HCM within the medical community.
Tim emphasizes, “For the general public who may have heart problems that are non-specific, the first thing they can do is to really know their family history.” He firmly believes in the importance of comprehensive treatment for HCM. According to Tim, an ICD implantation is a crucial life-saving measure for some, but it does not remove the immense burden of living with heart disease. One of Tim’s crucial messages to fellow HCM patients is the importance of clear communication about symptoms with healthcare providers. Recognizing and articulating specific symptoms could greatly aid in disease management.
For the General public who may have heart problems that are non-specific, the first thing they can do is to really know their family historyTim Westhaver
Tim’s insights, drawn from his lived experience, highlight the urgent need for more timely diagnosis and more refined treatment methods for HCM. He underscores the need for families and medical professionals to more frequently consider the potential for HCM, especially as it is considered to be a leading cause of sudden cardiac death in younger people.
Tim places great hope in the power of community and patient-led education. According to him, organizations like the Canadian SADS Foundation, “enable patients to be advocates for themselves and their families”. He believes that this approach will greatly alleviate stress and ultimately save lives. When it comes to treatment, Tim is hopeful about new medications. He talks about a myosin inhibitor that is showing promise in controlling the myosin gene, often the root cause of HCM.
Organizations like the Canadian SADS Foundation, enable patients to be advocates for themselves and their families.Tim Westhaver
Living with HCM has profoundly impacted Tim’s life, making his world smaller and forcing him to grapple with the unpredictability of the disease. However, he has found solace and understanding in patient support groups. Describing these groups as a “brotherhood”, Tim says, “Patient support groups help you breathe and get through the diagnosis and then help you through the ups and downs.”
In Tim’s journey, we witness the inspiring resilience of individuals living with HCM. His story stands as a powerful testament to hope and determination, sparking dialogue among patients and families, and pushing for advancements in managing and treating HCM.
The Canadian SADS Foundation would like to extend an invitation to others living with HCM. We urge you to share your stories, contribute to the dialogue, and add to the growing body of knowledge. Every narrative has the potential to inspire, educate, and create meaningful change. You are not alone on this journey, and your voice can illuminate the path for others navigating the same road. In sharing, we build a stronger, more supportive community for all affected by HCM.