5 things to remember when they stare

If you have a rare disease with any kind of physical abnormality, then you most likely get a few stares when you’re out in public, maybe even on a daily basis (I sure do). And I’m going to be honest—it hurts. No matter how old you get or how confident you get, staring is one … Continue reading 5 things to remember when they stare →

Older and stronger

This world tends to throw us curveballs left and right, and you never know when they’re coming for you. When they reach you, often they’re difficult to work through. And sometimes, the outlook gets bleak. You can fight something and do everything you can to get through certain hardships in life, but sometimes it seems … Continue reading Older and stronger →

My story

I never really thought my syndrome had a significant impact on me as a person. I was alone for most of my life, thinking I was the only person in the world with this rare disease. Until I was correctly diagnosed and met others like me, I really struggled with my differences. I was born … Continue reading My story →