Signs and Symptoms of X-linked Hypophosphatemia...X-linked hypophosphatemia (XLH) is a rare genetic disorder that affects the whole body. A person with XLH does not process the nutrient...reactionscomments
When We Medically Gaslight Ourselves...We're used to others medically gaslighting us – but what about when we do it to ourselves? In a previous article, I...reactionscomments
When We Are Eager to Undergo Medical Tests...Medical tests are not enjoyable by any means but that doesn't mean one won't feel eager to have a medical test performed...reactionscomments
Annie-Danielle Grenier...I raise awareness, educate and advocate for people living with rare and invisible diseases, having a few myself. I have hypermobile Ehlers-Danlos...
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 Diagnosis...Getting a new rare disease diagnosis can be a difficult undertaking. Some conditions, such as narcolepsy, are so misunderstood that it can...reactions26comments
Caring for a Child With a Rare Disease...Raising a child is never easy, but it can be especially challenging if your child has a rare disease. There are 5,000...
Community Views: We Are Rare, But Not Alone...Rare 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
When a Low Probability Feels Scary...I’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 Diseases...I'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 Giveaway...The Weight of Rare Disease Giveaway is now closed. Thank you for your interest! Living with a rare disease comes with daily...reactionscomments
General Mental Health Resources...Living with a mental health condition may pose many challenges. It requires coping, finding treatment, and managing the impact of the condition...
Glasses as a Form of Unique Expression With Rare Disease...Last week, I made the familiar journey from optometrist to optician, getting a new glasses prescription and ordering new frames. I have...reactions2comments
Aimee Perez...I was officially diagnosed with psoriasis at 17 years old in 2005. I experienced my first sign of plaque psoriasis at 12...
Finding Your Advocacy Voice: Embracing a Safe Community...As 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 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
Grief and Reimagining Advocacy Goals...Life 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 Disease...I 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
