Living with a Syndrome Without a Name (SWAN)When your doctor suspects you have an illness, they may give you one or more medical tests to help them make a...reactionscomments
Navigating the Chronic Illness Conversation: 4 Tips for Talking With Loved OnesIt can be so hard for people outside of the rare disease community to truly understand what we go through—ongoing symptoms, fatigue...reactionscomments
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
How to Navigate Online Doctor RatingsEditor’s Note: This article was originally written by Elizabeth Medeiros and shared by our partner site Psoriatic-Arthritis.com. The internet has changed how...reactions2comments
Where's Your Line? Navigating Repeated IV Attempts with a Rare DiseaseMy experience with a rare disease, which was the same for my mother too, is that our health is complicated, and so...reactions4comments
Why a Rare Disease Diagnosis Matters Beyond TreatmentRecently, a friend of mine, Fiona, visited her cardiologist. She has been having some troubling symptoms that have been going on for...reactionscomments
Community Views: Navigating the ER as a Rare Disease WarriorLiving with a rare disease creates unique obstacles to healthcare. Specialist doctors understand rare diseases best, but sometimes you need emergency care...reactions8comments
5 Tips for Coping with Stress and Chronic IllnessLiving with a rare disease can be stressful in its own right. For example, many patients face a history of medical trauma...reactionscomments
Why Joining Your Rare Disease Community Is ImportantWhen my son received his rare disease diagnosis back in 2020, I was told about a private Facebook group for families. At...reactionscomments
Setting Boundaries: What Self-care Looks LikeWhile 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
How I Stay Informed on Ehlers-Danlos Syndrome AdvocacyEver since I was diagnosed with the first of my three rare diseases, Ehlers-Danlos syndrome (EDS), I've tried to stay informed. It's...reactions3comments
How Do I Find a Specialist for My Rare Disease?When you are diagnosed with a rare disease, you will likely have many questions and concerns. Finding a specialist who can guide...reactionscomments
When It’s Not Laziness: Navigating Procrastination and 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
The Power of Multidisciplinary Rare Disease CareI used to hate any doctor's appointment. Having been born with hemophilia, many of my earliest trips to the hospital resulted from...reactionscomments
The Ethical Necessity of Truthfulness in Health AdvocacyBy upholding truthfulness and integrity, health advocates do more than just inform; we empower people to make decisions that significantly impact their...reactionscomments
How I Learned to Advocate for My Rare Disease CareI was diagnosed with my first rare disease, familial adenomatous polyposis (FAP), around the age of 8. FAP is a rare genetic...reactionscomments
More Than Just a Diagnosis: The Daily Impact of Rare DiseaseI wrote about this topic 10 years ago, and while I forgot I had written about it, it's something I've been talking...reactions3comments
Community Views: The Hardest Symptoms to ManageThere are many challenges to living with a rare disease. The challenges may be physical, mental, and emotional. Having a rare disease...reactionscomments
Community Views: What Makes Us UniqueLiving with a rare disease can sometimes feel all-consuming. It can take up so much of your time and mental bandwidth. But...reactionscomments
