What it means to be rare

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 →

Clinical Drug Trial Experience

I think it’s safe to say that any new medication that can potentially treat CLOVES Syndrome is quite a groundbreaking concept right now. It gives us hope that we are making progress. And for the last few months, I've have the opportunity to participate in one of the drug trials available: The ARQ Trial, which … Continue reading Clinical Drug Trial Experience →

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 →

Top 5 lessons I’ve learned living with my natural imperfections

We all know living with an anomaly can suck, no matter what it is. Throughout my life experiences so far, I’ve learned several lessons that over time have helped me rebuild the parts of my character that so often got torn down from the tough times. Though this may not apply to all since everyone … Continue reading Top 5 lessons I’ve learned living with my natural imperfections →

Parenting a child with CLOVES • by Julie, a CLOVES mother

My daughter asked me to write about what it’s like to parent a child with CLOVES Syndrome. When I started to think about what to write, I realized how hard it is to put into words as it is such a unique experience given the rarity of CLOVES Syndrome. Our journey began when Lindsay was … Continue reading Parenting a child with CLOVES • by Julie, a CLOVES mother →

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 →

5 things to remember when they stare

If you have a rare disease with any kind of physical abnormality, then you most likely get a few stares when you’re out in public, maybe even on a daily basis (I sure do). And I’m going to be honest—it hurts. No matter how old you get or how confident you get, staring is one … Continue reading 5 things to remember when they stare →

Why awareness is so important

A fear of the unknown is common among many, especially those living with any kind of disease. Not knowing what lies in your future medically, socially, emotionally, and/or mentally can be incredibly unsettling. Back before CLOVES was even discovered, most people with this syndrome were misdiagnosed as children, if doctors could pinpoint a diagnosis at … Continue reading Why awareness is so important →

Older and stronger

This world tends to throw us curveballs left and right, and you never know when they’re coming for you. When they reach you, often they’re difficult to work through. And sometimes, the outlook gets bleak. You can fight something and do everything you can to get through certain hardships in life, but sometimes it seems … Continue reading Older and stronger →

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 →