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
Tag: new
CLOVES Conference recap
A brief recap of the latest CLOVES Family Conference
New find!
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!
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