Caring for a Child With X-linked HypophosphatemiaX-linked hypophosphatemia (XLH) is a genetic disorder that affects how the body processes phosphorus (phosphate). Phosphorus is an essential mineral for healthy bones and growth. When XLH the body does...reactionscomments
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...reactionscomments
Rare Diseases and Preparing for an EmergencyMedical emergencies are certainly no fun, especially when a rare disease is in the mix. However, being prepared for a potential emergency can make the nightmare of a situation slightly...reactions2comments
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...reactionscomments
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...reactions2comments
Doctors and Specialists Who Treat X-Linked HypophosphatemiaPeople with X-linked hypophosphatemia (XLH) develop a wide range of symptoms such as weak bones and teeth, fractures, fatigue, and muscle weakness. This life-long condition requires treatment on several fronts...reactionscomments
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...reactions2comments
Webinar: Moments of Mindfulness – A Patient's PerspectiveWhat do people mean when they talk about practicing mindfulness? What are they actually doing? How much time does it take? Do you have to do it every day? How...reactionscomments
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...reactionscomments
What Is X-linked Hypophosphatemia?X-linked hypophosphatemia (XLH) is a rare disorder that causes low phosphorus levels. This happens because people with this condition pass the mineral phosphorus in the urine rather than using it...reactionscomments
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...reactionscomments
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...reactionscomments
Rare In America: What's That?The "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 you...reactionscomments
Transitioning From Pediatric to Adult Care With a Rare DiseaseYoung people living with a rare disease are living longer than ever. That’s the good news. The less-good news is that not many places exist for teens and caregivers to...reactionscomments
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...reactions1comment
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...reactions10comments
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...reactionscomments
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...reactions3comments
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...reactionscomments
The 2024 Social Health Awards ProgramEditorial Note: Nominations for 2024 are now closed. We are very excited to announce the launch of the 2024 Social Health Awards program! The Social Health Awards is an awards...reactionscomments
