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...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...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
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...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...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...reactionscomments
Finding My CallingI have always known I was meant to help others. It feels like an intense need to share my light and bring...reactions2comments
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...reactions5comments
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...reactionscomments
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...reactions2comments
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
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...reactions11comments
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...reactionscomments
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...reactionscomments
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
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...reactions1comment
When There’s a Shortage of the Medicine That Keeps You AliveI need 2 medications to survive. I don't mean it in the sense that my health would deteriorate faster. And I don't...reactionscomments
Try Walking in My BraceLife with a bleeding disorder makes getting around a whole lot harder as I age. I have moderate hemophilia and consider myself...reactionscomments
Not Medically FragileMy daughter was born with a rare form of muscular dystrophy called nemaline myopathy. She was three before we knew something was...reactions2comments
Managing Stress and Chronic IllnessStress is one of those factors that can really impact our overall health. Stress can affect the body in many ways, with...reactionscomments
