Author: peaceloveheal

Social worker, rare disease advocate, and adventure enthusiast embracing life with a rare diagnosis.

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 →

Making the decision to start Sirolimus

If you or a family member has CLOVES, then you know that there aren’t many options available to help treat it. Invasive methods are out there, like de-bulking surgery or sclerotherapy, but many people may not want to jump right into difficult medical procedures like those. Instead, there is another relatively new alternative available. A … Continue reading Making the decision to start Sirolimus →