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...Reactions0reactionsComments0 comments
Big Moves for Better CareIn 2016, I gave birth to my first child at a military hospital while my husband was Active Duty Marine Corps. I was truly amazed that I gave birth to such a...Reactions0reactionsComments3 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...Reactions0reactionsComments2 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 comments
4 Realities of Living With Advanced Symptoms of a Rare DiseaseAs someone living with advanced lung disease due to a rare disease called cystic fibrosis, I am all too familiar with the symptoms and burdens that this challenge brings to...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments4 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...Reactions0reactionsComments0 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...Reactions0reactionsComments8 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...Reactions0reactionsComments0 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...Reactions0reactionsComments2 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments2 comments
Living Life With Rare Diseases: Giving Up vs Not Giving UpAs I continue forward in my healthcare journey as a person with multiple rare diseases, I have begun to accept that I need to streamline my life, meaning I now...Reactions0reactionsComments5 comments
