No two patients have exactly the same journey to a HCM diagnosis. Listen to five patients tell their stories in their own words. Hear about the impact of HCM on their lives and their families, the challenges faced to reach their diagnoses and issues encountered to treat their symptoms and manage their disease. See the effect of HCM care through their eyes and understand the difference you can make.
A vibrant and outgoing 24-year-old with a passion for dancing, Nicole Thea was a devoted friend, who never missed a birthday and would do anything for her girlfriends. She loved to be around people and was a successful YouTube and Instagram influencer. Her untimely death as a result of undiagnosed HCM during her pregnancy left her family and friends devastated.
Willie is 56 and a former Olympic athlete who received an early diagnosis of HCM through a routine check up. When he began to experience symptoms 15 years after his diagnosis, he managed it with medication but over time became refractory to medical management.
Following several bouts of atrial fibrillation, issues with blood clots and risk of lung damage, Willie needed a heart transplant.
Watch his story as he shares his experiences.
Marsha was aware something wasn’t right, but despite doing a stress test in her 50s, she didn’t get the diagnosis she needed until later in life. When her symptoms got worse, her local doctors couldn’t help, but referred her to another center.
Following two alcohol septal ablations, she still didn’t feel any better. She eventually got a referral to a HCM Center of Excellence and had a myectomy.
Listen to how now, in her 70s, she is living an active life and re-started ballet, and doesn’t know what she’s going to be when she grows up.
Nadia was aware of HCM following her father’s diagnosis, but didn’t realise it was something she should be looking out for in herself, so her diagnosis during a routine check up was a surprise.
When symptoms began to develop, that medication struggled to control, Nadia eventually had a myectomy at 39 years old.
Hear Nadia share the impact of HCM on her and her family, and how her diagnosis affected her second pregnancy.
Joseph started feeling unwell around his 40th birthday, and within a few years, felt frail and was unable to do many things he used to with his family. At 54-years old, he was told he was at death’s door with no options and to get his affairs in order. A chance meeting threw him a lifeline and pointed him towards a HCM Center of Excellence, where he had a myectomy. Hear how since then, Joseph has been feeling better than ever and is living a grateful life.
Diagnosed at 5 months old, Anna had a myectomy at 9 months old. Now 24, Anna has been living with HCM her whole life. Hear how it affected her growing up and shaped her life. Listen as she shares how HCM affects her day-to-day life, both physically and mentally, plus the impact on her future plans.