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