"Anti-inflammatories, knee sleeve, home exercises focused on knee joint stability, and if there are no improvements or symptoms worsen in 6 weeks, come back in." My orthopedic doctor had just finished evaluating what the heck happened to my knee 2 weeks prior. My right knee, the one that didn't have issues before. Now I have … Continue reading Norms can change
Tag: awareness
A letter to my parents from your rare daughter
Dear Mom and Dad, I never quite knew how much weight and fear you carried as the parents of a rare disease child. Looking back on it now and having honest conversations with you about it, I now see how much you had to push through to put on a brave face for me and … Continue reading A letter to my parents from your rare daughter
An ever-changing journey
I've been enjoying attending music festivals for about 7 years now, and that is apparently a good enough amount of time to judge how much my disease has progressed over the years. Music festivals are exhausting, especially camping ones. They involve long days of walking, standing, and dancing, typically in heat if the festival takes … Continue reading An ever-changing journey
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
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
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
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
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
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
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
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