Keep fighting the good fight and sharing with us because not too many people get a chance to hear about what it's like from the inside. My parent has a few rare diseases that made growing up a very much different experience from my peers. These adversities are terrible, difficult to deal with and can make even the most optimistic person feel hopeless. But those same adversities also engender strength and resilience, as clearly evidenced by the story you shared with us. Thanks!
RE: What it's like to live with a RARE DISEASE that no one's ever heard of