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...reactionscomments
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...reactions1comment
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
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...reactions2comments
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...reactionscomments
SSI and Medicaid: Moving to a Place Based on Healthcare"What do you mean I'm not eligible for Medicare?" I groan into the phone. "I'm on Social Security, aren't I?" At this point, the Social Security agent kindly explained to...reactionscomments
Setting Boundaries: What Self-care Looks LikeWhile I started my medical journey when I was 8, it has taken nearly 30 years to understand the relationship between setting boundaries and one's well-being. I spent most of...reactionscomments
A Journey to My Authentic SelfI have always strived to see the silver linings or the good in every situation. My immune deficiency diagnosis of hyper IgE syndrome came from a near-death experience. I was...reactionscomments
Zebras Can’t Be Tamed: Coexisting With a Rare DiseaseZebras are part of the equine family, but they have never been truly domesticated. While they are kept in zoos, wild animal parks, and safaris, they have never let themselves...reactionscomments
My Multidisciplinary Care Team: Why I Love My Hemophilia Treatment CenterI used to hate any type of doctor's appointment. Having been born with hemophilia, many of my earliest trips to the hospital resulted from a nosebleed or some type of...reactionscomments
Asking for Help and Applying for DisabilityEditor's Note: This article was written by Halimat Olaniyan and originally appeared on our partner site Sickle-Cell.com. I’m not very good at asking for help when I’m sick. It’s ironic...reactionscomments
What a Caregiver Means to MeI talked with an old friend from high school who just found out he has a rare disease about how much our partners and caregivers mean to us. First, we...reactions4comments
