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
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...Reactions0reactionsComments0 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...Reactions0reactionsComments1 comments
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 mean it in the sense that my life...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 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...Reactions0reactionsComments2 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. If...Reactions0reactionsComments0 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...Reactions0reactionsComments2 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...Reactions0reactionsComments1 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...Reactions0reactionsComments0 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...Reactions0reactionsComments2 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...Reactions0reactionsComments2 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 comments
Rare In America: What's That?The Rare In America survey is now closed. Are you living with a rare disease? No matter where you are in your rare disease journey, we want to hear from...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments2 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...Reactions0reactionsComments0 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...Reactions0reactionsComments1 comments