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 Team 2 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 Team 3 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 Comments2 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 Team 3 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 Comments2 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... By Gina Miller3 min readBookmark for laterReactions 0 reactions Comments5 comments
Living With X-linked HypophosphatemiaX-linked hypophosphatemia (XLH) is a rare genetic condition that lasts a person’s entire life. It is caused by a mutation in the PHEX gene that prevents the body from using... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Misconceptions About My Rare DiseaseIt's hard to know exactly what someone else is going through, especially if the other person has a rare disease that most people have never heard of. I think it's... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 with a congenital rare disorder that causes physical... By Natalie Abbott2 min readBookmark for laterReactions 0 reactions Comments1 comments
How I Start Difficult Conversations About My Rare DiseaseWhen living with a rare disease, setting boundaries around physical limitations is important. As a person with narcolepsy, I've had to learn how to say "no" to people. This isn't... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments11 comments
When We Medically Gaslight OurselvesWe're used to others medically gaslighting us – but what about when we do it to ourselves? In a previous article, I shared my eagerness for medical testing to identify... By Jenny Jones2 min readBookmark for laterReactions 0 reactions Comments0 comments
Facing a Terminal IllnessBeing diagnosed with an incurable rare disease can be an incredibly difficult experience. It may affect you physically, emotionally, and spiritually. It is important to learn how to deal with... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
5 Ways I Reduce Stress With a Rare DiseaseLiving with a rare disease can be stressful in itself. There's the history of medical trauma, for example, from being put through the trash compactor that the U.S. calls a... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
Community Views: The Most Annoying Unsolicited AdviceIf you have ever expressed your feelings or concerns to a loved one about your rare disease, they may have responded with advice – and it is not always helpful... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments1 comments