When We Are Eager to Undergo Medical TestsMedical tests are not enjoyable by any means but that doesn't mean one won't feel eager to have a medical test performed...reactionscomments
What is a SWAN?When your doctor suspects you have an illness, they may give you one or more medical tests to help them make a...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
Community Views: We Are Rare, But Not AloneRare diseases can change your life with the everyday challenges it brings. It is hard enough to live with the constant stress...reactionscomments
Finally Diagnosed... Now What?A rare disease is one that affects less than 200,000 people. Rare conditions are hard to diagnose because not much is known...reactionscomments
Sponsored: Share Your Story and Help Raise Awareness for MMNBy argenx Living with multifocal motor neuropathy (MMN) can be a challenge. Everyone’s MMN journey is different—from diagnosis to symptoms to finding...
When a Low Probability Feels ScaryI’m no stranger to autoimmune conditions. Let's take a look: I am among the roughly 1% of the population that has celiac...reactions1comment
New Year’s Resolutions and Rare DiseasesI'm not a fan of New Year's resolutions. I'm sure many of us have seen or done this before – we make...reactionscomments
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
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
Finding Your Advocacy Voice: Embracing a Safe CommunityAs caregivers, warriors, and allies for individuals with rare diseases, finding our advocacy voice is crucial to raising awareness, promoting understanding, and...reactions4comments
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
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
Changing Scarcity Mindset to a Growth Mindset With Rare DiseaseI have been learning more about scarcity mindset, and it got me thinking about how common and easy it is to fall...reactions2comments
How Is Adult-Onset Still’s Disease Treated?In people with adult-onset Still’s disease (AOSD), the immune system does not work the way it should. Instead, their immune system proteins...reactionscomments
What Is the Difference Between Still’s Disease, Juvenile Idiopathic Arthritis, and Rheumatoid Arthritis?Adult-onset Still’s disease (AOSD), systemic juvenile idiopathic arthritis (SJIA), and rheumatoid arthritis (RA) are all forms of arthritis that share many similar...reactionscomments
Balancing Work and Caregiving: Parenting Kids With Special NeedsEvery morning, I wake up with a familiar sense of déjà vu as I feel like I have barely closed my eyes...reactionscomments
Questions to Ask Your Doctor When You Have Adult-Onset Still’s DiseaseLiving with adult-onset Still’s disease (AOSD) can be challenging and sometimes confusing. Even if you have been living with it for years...reactionscomments
Nutrition and Exercise With Adult-Onset Still’s DiseaseAdult-onset Still’s disease (AOSD) is a rare type of arthritis that can cause pain and joint damage. It is often managed with...reactionscomments
How Do I Know If I Have Adult-Onset Still’s Disease?Adult-onset Still’s disease (AOSD) is a rare inflammatory condition that affects mostly the joints. But it can affect many other areas of...reactionscomments
