Life with a rare disease brings so many unique challenges for every individual impacted. With CLOVES in particular, this disease manifests in every person differently so no two people diagnosed have the same symptoms. That means that not only do we have a unique experience being diagnosed with a rare disease, but we live an … Continue reading A rare community of support
Tag: community
Why I raise awareness
Roughly eleven years ago, I was diagnosed with CLOVES Syndrome. I was fourteen. I spent the first fourteen years of my life feeling incredibly alone, singled out, and wondering when I would ever know or understand what was wrong with me. That may be a common feeling for others out there in similar situations prior … Continue reading Why I raise awareness
A change in perspective
All my life growing up, one of the worst parts of living with CLOVES that always gave me anxiety was when strangers would ask me what happened to my foot. The stares, points, and questions about my syndrome really brought me down, and having to awkwardly respond to people when they asked that question was … Continue reading A change in perspective
CLOVES Conference recap
A brief recap of the latest CLOVES Family Conference
PeaceLoveHeal 