Updated: May 18, 2020
I was diagnosed with Paroxysmal Nocturnal Hemoglobinuria (PNH) in May of 2014. I believe the date was May 22— this year will be six years. Six years as a rare disease patient represents a journey that I grow more proud of every day. Learning to live with PNH has been anything but easy. 130+ treatments in, I have become more comfortable with this new normal. It has taken a long time to get to this point. Day Fifteen is a blog my wife and I have created to share about our experiences with PNH. I have written multiple “introduction” entries, but have scrapped them all as no words seem to describe the life change that comes with a rare disease diagnosis. (Insert big bag of emotions here)- that’s the best I can do. This has been a long time coming, so loudly I say, WELCOME!!!!!!! We are so glad that you are here and we hope that you share the beginnings of our story with others so we can begin making connections. Welcome, Welcome, Welcome!