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
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...Reactions0reactionsComments0 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
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...Reactions0reactionsComments0 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
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...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
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...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
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 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...Reactions0reactionsComments2 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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
