Not too long ago while at the gym, I was completing a set on the squat rack when I noticed an older man across from me on the other squat rack giving me odd looks. I could tell he was staring at my overgrown foot so I responded to this in my usual fashion - … Continue reading Give me a break
Tag: rare disease
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
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
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
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
PeaceLoveHeal 