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

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

Why awareness is so important

A fear of the unknown is common among many, especially those living with any kind of disease. Not knowing what lies in your future medically, socially, emotionally, and/or mentally can be incredibly unsettling. Back before CLOVES was even discovered, most people with this syndrome were misdiagnosed as children, if doctors could pinpoint a diagnosis at … Continue reading Why awareness is so important