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 lucky that I only have one recurring problem... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
Not Medically FragileMy daughter was born with a rare form of muscular dystrophy called nemaline myopathy. She was three before we knew something was different with her. She was just a little... By missprisswv1 min readBookmark for laterReactions 0 reactions Comments0 comments
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 symptoms affecting your body, mood, and behavior.1 If... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
Rare Diseases and Preparing for an EmergencyMedical emergencies are certainly no fun, especially when a rare disease is thrown into the mix. However, being prepared for a potential emergency can make a nightmare of a situation... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments0 comments
My MG JourneyI’ve always fallen down since childhood. Doctors didn’t know what I had. Never had enough strength to play kickball. Until I could. And then I couldn’t. I was smaller than... By MGgal3 min readBookmark for laterReactions 0 reactions Comments0 comments
Community Views: The Hardest Symptoms to ManageThere are many challenges to living with a rare disease. The challenges may be physical, mental, and emotional. Having a rare disease means many people will not understand your health... By Editorial Team3 min readBookmark for laterReactions 0 reactions Comments0 comments
5 Things About Mental Health and Life With Rare DiseasesMay is Mental Health Awareness Month. Like many in the rare disease community, maintaining my physical and mental health is ongoing work for me. Recently, I've been working to improve... By Natalie Abbott2 min readBookmark for laterReactions 0 reactions Comments0 comments
Understanding Non-apparent Disabilities in the WorkplaceAbout 1 in 4 American adults live with a disability. Many people living with a disability are able to work and do. For those with an invisible disability, the decision... By Editorial Team3 min readBookmark for laterReactions 0 reactions Comments2 comments
Living an Authentic Life With a Rare DiseaseI was diagnosed with narcolepsy halfway through my college career. My disease onset had been quick. Just a few weeks after getting a bad flu, I started exhibiting narcolepsy symptoms... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
My Accidental Rare Disease Diagnosis (Part 2)This is the second article in a 2-part series. Be sure to check out Part 1: New Symptoms, New Fears: The Beginning of My Rare Disease Diagnosis. After my 2... By Dusty Terrill3 min readBookmark for laterReactions 0 reactions Comments0 comments
Fighting Misconceptions Can Save Lives: Rare Disease SurveillanceMisconceptions abound amidst many health conditions – particularly rare diseases – and even among the medical treatments available to prevent or manage health conditions. This occurs not just outside the... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
Rare Disease In America: What's That?Are you living with a rare disease? No matter where you are in your rare disease journey, we want to hear from you. To learn more about the challenges of... By Editorial Team2 min readBookmark for laterReactions 0 reactions Comments0 comments
Xanadu I or Don't I? A Rare Disease Roller Skating OdysseyIn the earliest days of the COVID-19 pandemic, my partner Gwenn and her friends decided to order roller skates and take a spin together around a cul-de-sac. It felt fun... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
Yoga Doesn’t Cure My Autoimmune Diseases"Oh, you have XYZ disease? Have you tried yoga?" Wow, if I had a nickel for every time someone tossed this cookie-cutter suggestion my way. I'll take another nickel, please... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments2 comments
New Symptoms, New Fears: The Beginning of My Rare Disease Diagnosis (Part 1)In July 2015, I had my little boy. He was 8 pounds and 10 ounces of pure perfection. He was my third baby, and a surprise one at that. My... By Dusty Terrill5 min readBookmark for laterReactions 0 reactions Comments0 comments
Life With a Rare Disease: How the Little Things Add UpI wrote about this topic 10 years ago, and while I forgot I had written about it, it's something I've been talking about lately as I've been struggling with this... By Annie-Danielle Grenier2 min readBookmark for laterReactions 0 reactions Comments0 comments
Community Views: Navigating the ER as a Rare Disease WarriorLiving with a rare disease creates obstacles to healthcare. Specialist doctors understand rare diseases best. But sometimes, you need emergency care. And most doctors in the emergency room (ER) are... By Editorial Team3 min readBookmark for laterReactions 0 reactions Comments0 comments
The 2023 Social Health Awards ProgramEditorial Note: Nominations for 2023 are now closed. We are very excited to announce the launch of the 2023 Social Health Awards program! The Social Health Awards, previously known as... By Editorial Team1 min readBookmark for laterReactions 0 reactions Comments0 comments
The Power of the Words We Tell OurselvesI didn't fully realize how much my physical health impacted my mental health until recently. Sure, I know I've struggled with depression, anxiety, and anger as part of my medical... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
Finally Diagnosed... Now What?A rare disease is one that affects less than 200,000 people. Rare conditions are hard to diagnose because not much is known about them. A survey by the National Organization... By Editorial Team3 min readBookmark for laterReactions 0 reactions Comments0 comments
