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
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
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
Finding Resilience and Purpose After a Rare Disease DiagnosisMy life changed dramatically in my early twenties when I experienced the onset of a rare disease called narcolepsy. Everything shifted, seemingly...reactionscomments
Journey to Chronic Rare Disease TreatmentLiving with a rare disease is difficult. Accessing treatment can be hard for many. Many rare disease drugs are expensive. Some are...reactionscomments
NOW CLOSED: Finding Comfort in Rare: Awareness Month GiveawayThe Finding Comfort In Rare Giveaway is now closed. Thank you for your interest! February is Rare Disease Awareness Month, a crucial...reactions1comment
The Power of Your Voice: Sharing All Symptoms with All SpecialistsTime and time again, I'm reminded about the importance of telling every single one of my doctors about my health updates –...reactions2comments
Rare Disease Advocacy Is a Constant, Never-ending OpportunityRecently, I was reminded, in the most unexpected way, that advocacy doesn't take a break even when it's the furthest thing from...reactionscomments
Pacing Yourself, Pushing Yourself: How to Manage Energy Levels With a Rare DiseaseI am beginning this article on my commute train to work, starting another work week after a typical weekend for me of...reactions4comments
