"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... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Gina Miller4 min readBookmark for laterReactions 0 reactions Comments2 comments
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... By Shawn Decker4 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Natalie Abbott2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Editorial Team4 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Editorial Team2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments4 comments
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... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Editorial Team3 min readBookmark for laterReactions 0 reactions Comments8 comments
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... By MCabrera31 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Jessica Hanson4 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Editorial Team3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Shawn Decker4 min readBookmark for laterReactions 0 reactions Comments0 comments
Finding My CallingI have always known I was meant to help others. It feels like an intense need to share my light and bring calm or happiness. But I can't hold someone... By Dusty Terrill4 min readBookmark for laterReactions 0 reactions Comments1 comments
