Misconceptions About My Rare DiseaseIt's hard to know exactly what someone else is going through, especially if the other person has a rare disease that most people have never heard of. I think it's...reactionscomments
Disability Pride Month With a Rare DiseaseDisability Pride Month is celebrated in July to commemorate the signing of the Americans with Disabilities Act (ADA) in 1990. As someone with a congenital rare disorder that causes physical...reactions1comment
How I Start Difficult Conversations About My Rare DiseaseWhen living with a rare disease, setting boundaries around physical limitations is important. As a person with narcolepsy, I've had to learn how to say "no" to people. This isn't...reactions11comments
What to Know About Newborn Screening and Rare DiseasesNewborn screening (NBS) is a program in the United States that tests all babies for certain treatable medical conditions. Early detection and treatment with NBS is critical for children with...reactionscomments
How Is X-linked Hypophosphatemia Treated?X-linked hypophosphatemia (XLH) is a life-long condition in which the body does not process the nutrient phosphorus properly. Because phosphorus is necessary for a host of important functions, a wide...reactionscomments
When We Medically Gaslight OurselvesWe're used to others medically gaslighting us – but what about when we do it to ourselves? In a previous article, I shared my eagerness for medical testing to identify...reactionscomments
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...reactionscomments
Questions to Ask Your Doctor When You Have X-linked HypophosphatemiaReceiving a diagnosis of X-linked hypophosphatemia (XLH) can be challenging and overwhelming at first. Whether you are diagnosed as a baby, a child, or an adult, understanding your condition and...reactionscomments
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...reactionscomments
X-linked Hypophosphatemia and GeneticsX-linked hypophosphatemia (XLH) is a genetic condition. People with XLH have changes in a specific gene that affect how their body uses the mineral phosphorus (phosphate). These gene changes are...reactionscomments
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...reactions1comment
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...reactionscomments
Signs and Symptoms of X-linked HypophosphatemiaX-linked hypophosphatemia (XLH) is a rare genetic disorder that affects the whole body. A person with XLH does not process the nutrient phosphorus properly but instead passes it out in...reactionscomments
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...reactionscomments
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
