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

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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

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

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