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
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
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...Reactions0reactionsComments2 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
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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments1 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...Reactions0reactionsComments11 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 comments
