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
Permission to sweat the small stuff (& happy Rare Disease Day!)
Happy Rare Disease Day! As I’ve mentioned many times, living with CLOVES Syndrome is a journey of ups and downs. There are a lot of challenges, big and small, that come with this syndrome that can make life tough sometimes. I happened to be thinking one day about some of the ways that CLOVES impacts … Continue reading Permission to sweat the small stuff (& happy Rare Disease Day!)
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
Genetic testing experience
If you’re someone or if you know someone with a PROS condition (or any rare disease), you may be aware of how important it can be to get your genes tested to access some treatments. Lately, I’ve been in a rut trying to get tested for the PIK3CA gene. This may be a common process … Continue reading Genetic testing experience
A change in perspective
All my life growing up, one of the worst parts of living with CLOVES that always gave me anxiety was when strangers would ask me what happened to my foot. The stares, points, and questions about my syndrome really brought me down, and having to awkwardly respond to people when they asked that question was … Continue reading A change in perspective
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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