What does it mean to be rare? Being rare isn't easy. And it's different for everyone. For me, it means a childhood of searching the ends of the earth for a correct diagnosis, undergoing experimental surgeries and procedures, and wondering what the future holds... It also means waking up sometimes with random backaches where I … Continue reading What it means to be rare
Tag: disease
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
CLOVES Conference recap
A brief recap of the latest CLOVES Family Conference
Call to action
Lately, I’ve been experiencing a bit of a writing block. With starting my first full-time job and studying for my license exam, I haven’t had a lot of free time to just sit down and write. It can become hard to pursue your hobbies throughout a busy life. The reason this blog is so important … Continue reading Call to action
Most ridiculous comments I’ve gotten about my syndrome
Throughout the years, there have been some really outrageous, ignorant comments I’ve gotten regarding my foot from complete strangers. It’s a wonder how some people actually function socially when they can be so insensitive. I used to get embarrassed and let it get to me, but now I realize how hilarious some of these responses … Continue reading Most ridiculous comments I’ve gotten about my syndrome
Research is key
Advocating for CLOVES Syndrome doesn’t just mean advocating for the individuals and families affected. It also means advocating for stronger efforts to further research on the syndrome and the advancement of medical treatments in order to address the needs of those affected. With more of this, those with CLOVES have more of a chance to … Continue reading Research is key
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