Roughly eleven years ago, I was diagnosed with CLOVES Syndrome. I was fourteen. I spent the first fourteen years of my life feeling incredibly alone, singled out, and wondering when I would ever know or understand what was wrong with me. That may be a common feeling for others out there in similar situations prior … Continue reading Why I raise awareness
A brief recap of the latest CLOVES Family Conference
For anyone with CLOVES (or any other disease) who has uneven sized feet or an overgrown foot, buying shoes can be a really difficult task. It's been hard for me all my life, and I've always had very limited options. Only New Balance has had a pair of shoes that work for me, and they … Continue reading New find!
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