Life can change fast . Sometimes it’s one symptom. One scan. One “we’re not sure yet.” And suddenly you’re on a long road you never asked to be on. My story isn’t just about heart disease. It started with an idiopathic rare disease  that most people including doctors have never even heard of. That rare disease set off a chain reaction that eventually led to something wild: a 52mm EVOQUE transcatheter tricuspid valve replacement —basically a new heart valve placed through a ca

At HeartBridge Collective (HBC) , we support patients and caregivers alike — because rare disease is never a solo journey. It affects the whole household, the whole family, and often the same two people day after day. When a rare disease is discussed, the focus is usually on the patient. But standing right beside them is a caregiver whose physical, emotional, and mental health are also on the line. Research now confirms what families have been saying for years: the emotiona

Breathing is automatic for most people. For me, it was something I had to think about constantly. I wasn’t wheezing or dramatically...