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
Life With a Rare Disease: How the Little Things Add UpI wrote about this topic 10 years ago, and while I forgot I had written about it, it's something I've been talking...reactions3comments
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
How to Start Your Own Advocacy GroupAdvocacy groups are dedicated to a specific cause. They are made up of motivated members who come up with plans to make...reactions1comment
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
Learning Self-Advocacy With Rare DiseaseI was diagnosed with my first rare disease, familial adenomatous polyposis (FAP), around the age of 8. FAP is a rare genetic...reactionscomments
