Doctors can not figure out wife's medical issue...After over a year of testing they still can not figure out what is wrong. My wife had had roughly 8 cat...reactions4repliesTreatmentSymptomsDiagnosis
Shining a Light on Rare Diseases...As a young mom raising a child with a rare disease, I've learned that feeling pressure from uncertainty and heartache is normal...reactionscomments
Phrenic Nerve Palsy...Two and a half years ago I had acute neck and shoulder pain. This lead to severe dyspnea treated as asthma, but...reactions1comment
ARFGEF-1: Neurodevelopmental Spectrum Disorder...I grew up feeling different. I was told I never felt pain, yet I seemed to know when I was hurt. The...reactions6comments
Journey to a Rare Disease Diagnosis...Getting a new rare disease diagnosis can be a difficult undertaking. Some conditions, such as narcolepsy, are so misunderstood that it can...reactions26comments
Starting a Family When You Have Congenital Adrenal Hyperplasia...Congenital adrenal hyperplasia (CAH) is a genetic condition that can affect people of any sex. This is a rare condition that can...reactionscomments
Transitioning to Adult Care With Congenital Adrenal Hyperplasia...Congenital adrenal hyperplasia (CAH) is a lifelong condition that affects the adrenal glands, causing hormonal imbalances. For those with CAH, moving from...reactionscomments
Navigating Overnight School Trips When Your Child Has a Rare Disease...As a parent of a child with 2 chronic conditions, preparing my daughter for an overnight school field trip without me was...reactions2comments
1 year later, no diagnosis...Mom looking for support...It's been a little over a year since all this started. 2 hospital stays each 1 week long. First...reactions2repliesDiagnosisSymptomsTips & Advice
Recently been diagnosed ...With dermatomyositis, unfortunately I've been suffering now from it for almost 4 years. I have athrophy my thinking space isn't what it...reactions2repliesDiagnosisDepressionCoping
How to get diagnosed?...Hello. I have a rare disease no one has heard of. I've tried to get into a rare disease clinic but they...reactions6replies
Early Intervention Gave Me Hope...When I first heard, "Your child has a global developmental delay," my heart shattered. At 22, a new and young mom, I...reactions1comment
Calling Out with Grace...I try to approach life by considering others' perspectives, not just mine. Sometimes, though, I fail at this. As a rare disease...reactions5comments
Disclosing Rare Disease Needs...When living with a rare disease, how often do you disclose your needs? Daily? Weekly? Monthly? Living with a rare disease usually...reactions2comments
Nags and /or citrine deficiency ...Looking for others who have NAGS and or Citrine Deficiency. I'm curious of how are others doing with having these rare diseases/deficiencies?...reactions2repliesCaregiving
My Child May Have a Rare Disease, but I Still Dream Big Dreams for Her...15 years ago, I became the mother of a daughter who lives with a rare disease. My daughter has a rare disease...reactions3comments
I am diagnosed with both Neuromyelitis Optica and Myasthenia Gravis. I am searching for others with the same diagnosis. ...I want to know the statistics regarding how many people there are in the world diagnosed with both Neuromyelitis Optica and Myasthenia...reactions2repliesDiagnosisSide EffectsSymptoms
10 Empowering Tips to Prepare Your Child Living With a Rare Disease for College...I want to talk to you about something close to my heart – preparing your high school child living with a rare...reactions5comments
What life lessons or advice is important to pass on to children and young adults living with a rare disease?...What can parents and caregivers do to help set their children up for success as they grow up? What has been helpful...reactions4repliesCaregiving
