How I Travel With a Chronic Illness..."Still round the corner, there may wait, a new road or a secret gate." – J.R.R. Tolkien Living in a body with...reactionscomments
After a Rare Disease Diagnosis: My Avalanche of Comorbidities...When I was diagnosed with my first rare disease, I got sicker. What? Of course not. Getting a diagnosis doesn't change how...reactions3comments
Doctors and Specialists Who Treat X-Linked Hypophosphatemia...People with X-linked hypophosphatemia (XLH) develop a wide range of symptoms such as weak bones and teeth, fractures, fatigue, and muscle weakness...reactionscomments
Exercising When You Have a Lung Condition...Shortness of breath and fatigue are common symptoms of lung conditions. These issues can make it hard to want to exercise. They...reactionscomments
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
Setting Boundaries: What Self-care Looks Like...While I started my medical journey when I was 8, it has taken nearly 30 years to understand the relationship between setting...reactions3comments
I’ve Learned Self-care. What About Self-love?...When we experience chronic illness, particularly a rare disease, I believe it's common for us to have trouble not just providing ourselves...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
Sponsored: Share Your Story and Help Raise Awareness for MMN...By 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 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...
