Rare Disease Day 2020
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
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
Most ridiculous comments I’ve gotten about my syndrome
Throughout the years, there have been some really outrageous, ignorant comments I’ve gotten regarding my foot from complete strangers. It’s a wonder how some people actually function socially when they can be so insensitive. I used to get embarrassed and let it get to me, but now I realize how hilarious some of these responses … Continue reading Most ridiculous comments I’ve gotten about my syndrome
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
