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 a lot of complications, but a mother's intuition... By MCabrera31 min readBookmark for laterReactions 0 reactions Comments1 comments
Not Medically FragileMy daughter was born with a rare form of muscular dystrophy called nemaline myopathy. She was three before we knew something was different with her. She was just a little... By missprisswv1 min readBookmark for laterReactions 0 reactions Comments2 comments
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. And then I couldn’t. I was smaller than... By MGgal3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 unbearably itchy papules which dominate life preventing normal... By CommunityMember1a2dea1 min readBookmark for laterReactions 0 reactions Comments2 comments
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 didn’t have the energy to make it to... By tracifhardin4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 numbers on tests for everything. If your numbers... By Habberdasher3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 as high as you can. Move your eyes... By AmyMillardChronicMom2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 disease can be a challenge, but the more... By Editorial Team1 min readBookmark for laterReactions 0 reactions Comments0 comments