When Stubbornness Pays OffI knew from childhood that there was something different in my health from other kids. It seems as if I was born...reactions2comments
Medical Mystery Turned Into a Rare Disease WarriorJosiah J is a wild spirited two-year-old who has familial cold autoinflammatory syndrome (FCAS). When I was pregnant with Josiah I developed...reactions3comments
Not Medically FragileMy daughter was born with a rare form of muscular dystrophy called nemaline myopathy. She was three before we knew something was...reactions2comments
My MG JourneyI’ve always fallen down since childhood. Doctors didn’t know what I had. Never had enough strength to play kickball. Until I could...reactions6comments
My Prurigo Nodularis StoryI was diagnosed with the above disease last year. It has a prevalence of around 3/10,000. The aetiology is unknown. It causes...reactions3comments
Acromegaly: My Ups and DownsThe year my son Tyler entered kindergarten, I started the school year active and involved in Tyler’s classroom. But, by December I...reactions2comments
Tired of Doctors Calling Me UnusualI've learned a lot about the medical profession over the years and here in the west, they are trained to look at...reactions6comments
Amy’s story: Let’s play a little game● Lift up your right arm, and now lift up your left. Lower them again. ● Tip your head up. Look up...reactions5comments
Welcome to RareDisease.net Stories!At RareDisease.net, we believe that we are stronger together than we are alone. Living with or caring for someone with a rare...reactionscomments
