Self-Care Is The Best CareSimply put self-care means taking time to do things that will protect your well-being and happiness. It’s those things that will pour...reactions1comment
The Impact a Rare Cancer Has Had On My LifeBeing diagnosed with cancer 16 years ago changed my life forever. Nothing can prepare your mind, or body to be told you...reactions2comments
My Wild RideI was diagnosed with myathenias gravis in September of 2022. I presented with shortness of breath while doing water aerobics. Sounds crazy...reactions4comments
Attack Ataxia: Shundra's JourneyI have three family members that have passed from complications of this hereditary condition. My two oldest sisters and a nephew. Spinocerebellar...reactions2comments
You're Just ComplicatedHave you ever been told that you are complicated by a medical professional? I have time and time again. My journey started...reactions2comments
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
