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Tag: research

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

CLOVES Conference recap

A brief recap of the latest CLOVES Family Conference

peaceloveheal Uncategorized 4 Comments August 7, 2019August 9, 2019 6 Minutes

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 →

peaceloveheal awareness, Uncategorized 1 Comment February 13, 2019February 14, 2019 3 Minutes

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 →

peaceloveheal awareness Leave a comment August 3, 2018August 3, 2018 4 Minutes

Rare isn’t so rare

30 million people are living with rare diseases in the United States today. That’s 1 in 10 Americans. Worldwide, about 350 million people suffer from rare diseases. If all of the people diagnosed with rare diseases lived in one country, it would be the world’s 3rd most populated country. How wild is that? For how … Continue reading Rare isn’t so rare →

peaceloveheal awareness Leave a comment February 28, 2018August 3, 2018 4 Minutes

About Me

peaceloveheal

peaceloveheal

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

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