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
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My story
I never really thought my syndrome had a significant impact on me as a person. I was alone for most of my life, thinking I was the only person in the world with this rare disease. Until I was correctly diagnosed and met others like me, I really struggled with my differences. I was born … Continue reading My story