A rare community of support

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 →

CLOVES awareness and what it means

CLOVES Awareness Day. August 3rd. This day means a lot of things. A day to educate others about CLOVES. A day to share your story about living with CLOVES. A day to wear green or your CLOVES merch to represent this special day. A day to donate to CLOVES Syndrome Community to support them or … Continue reading CLOVES awareness and what it means →

Permission to sweat the small stuff (& happy Rare Disease Day!)

Happy Rare Disease Day! As I’ve mentioned many times, living with CLOVES Syndrome is a journey of ups and downs. There are a lot of challenges, big and small, that come with this syndrome that can make life tough sometimes. I happened to be thinking one day about some of the ways that CLOVES impacts … Continue reading Permission to sweat the small stuff (& happy Rare Disease Day!) →

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 →