A healing process

When I was elementary school age, I wrote a letter to Santa on Christmas Eve wishing for my foot to be "normal." I asked for that and only that because I wanted it so fiercely. I wrote this letter alone in my room and left it by the fireplace on Christmas Eve. I didn't speak … Continue reading A healing process →

A rare community of support

Life with a rare disease brings so many unique challenges for every individual impacted. With CLOVES in particular, this disease manifests in every person differently so no two people diagnosed have the same symptoms. That means that not only do we have a unique experience being diagnosed with a rare disease, but we live an … Continue reading A rare community of support →

Rude staring will always happen, but I don’t always have to stand for it

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 →

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 →

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 →