One In Fifteen: My StoryI was born at 24 weeks - weighing under a pound and was only 8 inches long. My parents were told I...reactionscomments
Crafting Hope: How Art Helps Me Navigate Rare DiseaseLiving with a rare disease can be exhausting and monotonous. The uncertainty of living with a chronic condition can cast a shadow...reactions3comments
Finding Peace in the Unknown: My Journey Through Pain, Purpose, and EmpowermentI believe in the transformative power of love, grace, and peace. My journey of self-discovery has shown me that in helping others...reactions1comment
Rare Diseases, Disability, and Self-Identity: I Am More Than My ConditionI didn't always see myself as someone living with a rare disease. For years, I fought to hold onto the life I...reactions6comments
The Weight of Rare Disease GiveawayThe Weight of Rare Disease Giveaway is now closed. Thank you for your interest! Living with a rare disease comes with daily...reactionscomments
How I Rate Various Pains With Multiple Rare DiseasesI don't remember what it's like not to be in pain. On a good day, I might say I'm "without pain." But...reactions6comments
Glasses as a Form of Unique Expression With Rare DiseaseLast week, I made the familiar journey from optometrist to optician, getting a new glasses prescription and ordering new frames. I have...reactions2comments
Journaling As a Daily Tool for Rare DiseaseWhen I was first diagnosed with narcolepsy, I felt like I was drowning. I floundered in confusion. All of these new symptoms...reactions12comments
Grief and Reimagining Advocacy GoalsLife with a rare disease can be unpredictable, and the mental health toll can be significant as we often grapple with loss...reactions3comments
How Therapies Treated My Musculoskeletal Injuries from Rare DiseaseDue to short bowel syndrome (SBS), I've endured years of malnutrition, and even the years I've been well-nourished, I still have nutrient...reactions1comment
Horses Helping Rare Diseases: Equine-Assisted TherapiesDecember 13th celebrates National Day of the Horse in the United States. On this day, people are encouraged to honor the economic...reactions3comments
My Approach to Taking MedicationsIn my experience and that of my family, with rare disease comes several additional health conditions. As a result, there is usually...reactions5comments
How to Manage Fluctuating Symptoms With Rare DiseaseHave you noticed that your symptoms fluctuate or change, sometimes unexpectedly, as a person with a rare disease? I have type 1...reactions3comments
Staying Informed on Your Rare Disease for Better AdvocacyEver since I've been diagnosed with the first of my 3 rare diseases, Ehlers-Danlos syndrome (EDS), I've tried to stay informed. It's...reactions3comments
Don't Put Things Off With Rare DiseaseDon't get me wrong—I can sometimes be the queen of procrastination. I have my "lazy" moments. But I want people to understand...reactions1comment
From Reactive to Proactive: Self-Administered TreatmentThere's been a big change this year in how I approach my rare disease, hemophilia A. I'm treating myself at home once...reactions5comments
Tips for How to Set Boundaries With OthersMore likely than not, if you're reading this, then you've likely experienced someone crossing your boundaries as a chronic illness/rare disease patient...reactions11comments
Shining a Light on Rare DiseasesAs a young mom raising a child with a rare disease, I've learned that feeling pressure from uncertainty and heartache is normal...reactionscomments
Journey to a Rare Disease DiagnosisGetting 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 HyperplasiaCongenital adrenal hyperplasia (CAH) is a genetic condition that can affect people of any sex. This is a rare condition that can...reactionscomments
