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
Tag: syndrome
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
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
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