Besides a lack of information for rare disease patients, caregivers of those Rare Warriors have even less guidence. I remember leaving the hospital, no one gave any advice to my parents on what to do with me. You know what that created? A giant, nasty monster! All of the sudden my life was controlled down to the minute, I became “bubble girl” and their fear got the best of them. That awful experience inspired this post. As someone with a rare disease, I want to tell you that there are things you CANNOT control. It takes time to accept that, and when you do everyone will benefit. Continue reading