Results for "light up for rare"

My life changed in an instant. 32 years old, mom to 5 kids aged 2-13, business owner, married mom. Our newspaper business had just gotten… Continue reading I am a Zebra and then Rare Disease Community is My Herd

Sometimes, just sometimes, I find writing helps. But I find it difficult writing about illness. And the thought of subsequently publishing it gives me chills,… Continue reading Rising up against Cryo

MY STORY: In light of Rare Disease Month, I wanted to share my story with many of you that do not know it. I was… Continue reading My Ledderhose/Dupuytren’s Disease Story

My name is Catriona Humphrey and I have been a parent to four beautiful children for almost twenty years; however, these last few months have… Continue reading Family Facing 2nd Rare Disease Fights For The Life of Their Youngest

Hi, T hope you can understand what my journey has been over the past 7 years of being disabled from my Diseases. I am now… Continue reading NeuromyelitisOptica & my other Rare Diseases

I’ve never been a “healthy” person. All my life I struggled with health issues. I grew up in an area of the United States called… Continue reading A Soup of Rare Diseases