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Tag: story

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 →

peaceloveheal awareness Leave a comment August 3, 2020September 24, 2021 5 Minutes

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 →

peaceloveheal Uncategorized Leave a comment June 30, 2017January 20, 2021 4 Minutes

About Me

peaceloveheal

peaceloveheal

Social worker, rare disease advocate, and adventure enthusiast embracing life with a rare diagnosis.

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