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
Disability Pride Month With a Rare DiseaseDisability Pride Month is celebrated in July to commemorate the signing of the Americans with Disabilities Act (ADA) in 1990. As someone...reactions1comment
What to Know About Support GroupsSupport groups are a resource and outlet commonly recommended for navigating and coping with an identified life stressor such as a rare...reactions6comments
Community Conversations: Sharing Our Experiences With Rare DiseasesEvery rare disease journey is unique, but we have found here at RareDisease.net that our members have shared experiences. From difficult diagnoses...reactionscomments
Voices in the Rare Disease Community: What's Your Story?Every day, we take in stories from the world around us. We consume them on social media. We read about them in...reactionscomments
Lessons Learned in Navigating Medical DebtWith any medical event, but especially when it's a chronic illness or rare disease, medical debt can easily build up. Depending on...reactions12comments
Disclosure in the WorkplaceWhen it comes to your rare disease, have you ever struggled in the workplace over who to tell anything to? I have...reactions10comments
My Approach to Taking MedicationsIn my experience and that of my family, with rare disease comes several additional health conditions. As a result, there is usually...reactions5comments
Crafting Hope: How Art Helps Me Navigate Rare DiseaseLiving with a rare disease can be exhausting and monotonous. The uncertainty of living with a chronic condition can cast a shadow...reactions6comments
Exploring Non-Drug Pain Management OptionsChronic pain, unfortunately, seems to accompany rare diseases too often. I began having chronic pain early on with my rare disease, and...reactionscomments
Fighting Misconceptions Can Save Lives: Rare Disease SurveillanceMisconceptions abound amidst many health conditions – particularly rare diseases – and even among the medical treatments available to prevent or manage...reactionscomments
A Guide to Awareness Proclamations: What Are They and Why Do They Matter?Let’s talk about awareness proclamations. It’s likely fair to say that most of us have seen an awareness proclamation announcement by a...reactionscomments
Coordinating Care With a Rare DiseaseMany general medical practitioners are not educated about rare diseases. This can make it difficult for people with rare diseases to get...reactions1comment
Living an Authentic Life With a Rare DiseaseI was diagnosed with narcolepsy halfway through my college career. My disease onset had been quick. Just a few weeks after getting...reactions5comments
My Rare Disease Does Not Make Me a BurdenI recently came across a journal article discussing the "challenges" of parenting a child with my rare disease. This triggered feelings of...reactions1comment
I Thought They Understood: Living With An Invisible DiseaseRecently, I thought I had found a group of friends who would stick by my side, who understood what I was going...reactions31comments
