Inclusivity and Rare Diseases: 6 Things for Friends and Family to ConsiderSocial situations can be very difficult to navigate with a rare disease or chronic illness. From navigating logistics to friends just not quite getting it, it can certainly feel exhausting...reactionscomments
"What's Up, Doc?" What the Doctor-Patient Relationship Means to MeYour relationship with your doctor can have a big impact on your health. Since your doctor is a key member of your healthcare team, they should be someone you are...reactionscomments
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 with self-care but also self-love. We can easily...reactionscomments
Building a Rare Disease Treatment Plan Brick-by-BrickIt can take years to build an effective treatment plan to treat a rare disease like narcolepsy. I know this from my own personal experiences of living with narcolepsy, as...reactionscomments
When a Rare Disease Diagnosis Brings Clarity (And New Concerns)At age 65, I was diagnosed with cystic fibrosis (CF) by National Jewish Health (NJH) in Denver 6 months after I took myself there for a MAC lung disease evaluation...reactions2comments
Some of My Most Absurd Rare Disease MishapsAlthough hilarity is not often associated with a rare disease, I'm glad I can laugh off a lot of the indignities that can come with mine. Having just turned 48...reactionscomments
Pacing Yourself, Pushing Yourself: Managing Energy 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 rest and activities. Like many people with rare...reactionscomments
How Persistence and Medical Partnership Impacts DiagnosisI am a complicated rare disease patient. Not only do I have 2 rare diseases and am potentially developing a third, but whenever I have a new medical condition, it...reactionscomments
Landing the Right Advocacy OpportunityEditor's Note: This article was written by Wunmi Bakare, a Health Leader living with sickle cell disease. Read more of Wunmi's articles at Sickle-Cell.net. Through my work in advocacy, an...reactionscomments
Journey to Chronic Rare Disease TreatmentLiving with a rare disease is difficult. Getting access to treatment for rare diseases can make treatment inaccessible for many. Many rare disease medications are expensive and subject to price...reactionscomments
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 your mind. I attended an At-Large Meeting for...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 of symptoms. It gets even harder when you...reactionscomments
5 Changes I Would Like to See in the U.S. Healthcare SystemAs someone who has been to many, many doctors for multiple chronic illnesses and a rare disease, there are so many things I wish for in the American healthcare system...reactions4comments
What If I Hadn't Been Born With a Rare Disease?There's a Marvel Comics series called "What If...?" It offers mind-bending scenarios about what could have happened if one little thing was different about a character. WHAT IF...Spider-Man was bitten...reactionscomments
Why I Am Scared to Own a Handicap Parking StickerEditor's Note: This article was written by Janeil Whitworth, a Health Leader living with cystic fibrosis. Read more of Janeil's articles at Cystic-Fibrosis.com. Disability is not always visible. Disability can...reactions8comments
Medical Mystery Turned Into a Rare Disease WarriorJosiah J is a wild spirited two-year-old who has familial cold autoinflammatory syndrome (FCAS). When I was pregnant with Josiah I developed a lot of complications, but a mother's intuition...reactions2comments
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 with the bare minimum of daily tasks necessary...reactionscomments
Planning a Vacation With a Rare DiseaseSummer is here! Time to travel to new places, experience local cuisine, and have some fun in the sun! Okay, easier said than done for individuals with chronic illnesses. With...reactions2comments
Hygiene and Chronic Illness: 5 Tips for "Lazy" PeopleEditor's Note: This article was written by Mikayla Bianchin, a Health Leader living with cystic fibrosis. Read more of Mikalaya's articles at Cystic-Fibrosis.com. While living with a chronic illness, keeping...reactionscomments
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 we live more than 60 miles apart, we...reactionscomments
