Results for "light up for rare"

~ I had hoped Liliana’s birth would be the end of the pregnancy chaos, but I had no idea it was only the beginning. During… Continue reading Liliana’s Legacy

My name is Lauren. I am 25 years old and have not only 1 but 2 rare diseases. After 23 years of having infection after… Continue reading Zebra Unleased–25 years of falling apart…literally

Hello, my Name Is Debbie I have AVN in my knee I found out in 12/2014 I am not sure exactly how I got AVN… Continue reading My AVN Journey(Avascular Necrosis)

What can you say my story of how I was born as an Intersex/DSD person and living my life is as unique as the next… Continue reading Life with Kallmann’s syndrome

Soon, on February 29th there will be RARE DISEASE DAY and I want to share my PATIENT VOICE with you. In 2007 my first son… Continue reading Okke and Bohring-Opitz Syndrome

I know the title sounds kind of morbid, but this is based on a real scenario and it happened during my college years! A SIMPLE… Continue reading Back from the dead!

I spend my life medicated, but there is still pain; a lot of pain. It is unclear if I was born with or if I… Continue reading This is My Story

Story of my life. I am Ncumisa Zimbini Beja 24 year who was born with a rare disease “Muffen`s Syndrome” Many things were different in… Continue reading Life is a Journey keep walking

I’m writing in support of Tobias Rex, one of my 4 year old Preschool students who has convinced himself and everyone around him that he… Continue reading Crime fighting Toby