Two weekends ago, my fiancé James and I had just arrived to the pumpkin patch for some fall festivities. We were meeting my sister-in-law later as well for a nice little Saturday. James was wearing nice pants and a Henley top, and I had on some baggy jeans, a flannel, and of course, my normal … Continue reading Rude staring will always happen, but I don’t always have to stand for it
CLOVES awareness and what it means
CLOVES Awareness Day. August 3rd. This day means a lot of things. A day to educate others about CLOVES. A day to share your story about living with CLOVES. A day to wear green or your CLOVES merch to represent this special day. A day to donate to CLOVES Syndrome Community to support them or … Continue reading CLOVES awareness and what it means
Give me a break
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
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
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
PeaceLoveHeal 