The Lingering Threat of Self-StigmaLiving with a rare medical condition is a multi-faceted endeavor. First, you have the medical reality, where your own acceptance is imperative...reactionscomments
Getting Beyond the BS (Beyond Severe)Disclosing a medical condition is tricky territory because we always have to be prepared for the worst possible reaction. Sadly, the scale...reactionscomments
My Rare Disease Journey With HemophiliaGreetings! My name is Shawn, and I'm happy to be a contributing writer for RareDisease.net. Maybe you are also living with a...reactionscomments
From Reactive to Proactive: Self-Administered TreatmentThere's been a big change this year in how I approach my rare disease, hemophilia A. I'm treating myself at home once...reactions5comments
Am I Too Chill About My Rare Disease?Recently, I had lunch with my fellow RDs (Rare Diseasers). These are some of my friends who also live with hemophilia. Since...reactionscomments
Living for the Good ThingsLiving with a rare disease comes along with a lot of difficulties. It can be scary at times, too, not having control...reactionscomments
How to Manage Fluctuating Symptoms With Rare DiseaseHave you noticed that your symptoms fluctuate or change, sometimes unexpectedly, as a person with a rare disease? I have type 1...reactions3comments
Thriving with a Rare Disease: 5 Personal Strategies for Stress ReductionLiving with a rare disease can be stressful in itself. There's the history of medical trauma, for example, from being put through...reactionscomments
So You Have a Rare Disease… Now What?Being diagnosed with a rare disease can be shocking, even scary! When I was diagnosed with Narcolepsy Type 1, I was relieved...reactions7comments
Journaling As a Daily Tool for Rare DiseaseWhen I was first diagnosed with narcolepsy, I felt like I was drowning. I floundered in confusion. All of these new symptoms...reactions12comments
A Rare Reality: 5 Crucial Takeaways for Mental Health AwarenessLike many in the rare disease community, maintaining my physical and mental health is ongoing work for me. Recently, I've been working...reactions2comments
Keeping Your Medical Records OrganizedKeeping track of your medical records is essential for your health, especially when you or your child has a rare disease. With...reactionscomments
Understanding and Managing the Non-Pancreatitis Symptoms of Familial Chylomicronemia SyndromeWhen people talk about familial chylomicronemia syndrome (FCS), they often focus on acute pancreatitis. This severe abdominal pain is a serious and...reactionscomments
What Is Familial Chylomicronemia Syndrome (FCS)?Familial chylomicronemia syndrome, or FCS, is a metabolic disorder. This means it is a problem with how the body processes substances to...reactionscomments
Community Views: The Biggest Misconception About My Rare DiseaseHaving a rare disease poses problems many people can not imagine. It can be discouraging to share your experiences when others do...reactionscomments
My Chronic Pain Scale: Describing Pain with Multiple Rare DiseasesI don't remember what it's like not to be in pain. On a good day, I might say I'm "without pain." But...reactions6comments
My Rare Disease Holiday Survival GuideLiving with a rare disease like narcolepsy means that I have to live my life around my symptoms. Unfortunately, we don't get...reactions3comments
3 Ways I Combat BurnoutAs a person living with a rare and chronic disease, I have much less energy than the average person. Even keeping up...reactionscomments
Into the Unknown With My Rare DiseaseI had a dream (or was it a nightmare?) last night about my disease symptoms increasing rapidly. I woke up blurry-eyed, slightly...reactionscomments
What Is the Impact of Rare Disease Awareness Days?January marks the awareness day for one of my rare diseases, Moebius syndrome. Awareness is sometimes a funny concept when it comes...reactionscomments
