What to Know About Rare Motor Neuron DiseasesMotor neuron diseases (MNDs) are a class of diseases that affect certain important cells. These cells, called motor neurons, control the muscles that help with movement. Your body uses motor... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
How Is X-linked Hypophosphatemia Diagnosed?X-linked hypophosphatemia (XLH) is a chronic, progressive disease, so early diagnosis is important to stop symptoms from getting worse. XLH is diagnosed using a combination of blood, urine, and imaging... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 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... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 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... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 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... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Children and Rare Diseases: Tips for Navigating Emergency CareWhen your child lives with a rare disease, you expect to make regular visits to the doctor for care. But sometimes the unexpected happens, which could mean a trip to... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Keeping Your Medical Records OrganizedKeeping track of your medical records is essential for your health, especially when you or your child has a rare disease. With organized medical records, you can track changes and... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Terms to Know When You Have Adult-Onset Still’s DiseaseEven if you have lived with adult-onset Still's disease (AOSD) for years, new terms can come up often. Whether you are new to the AOSD world or wanting to understand... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
The Impact of Rare Disease on SiblingsA rare disease diagnosis affects the entire family. When a rare disease touches a child, parents become caregivers. Taking care of the child and maintaining their health may become all-consuming... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
How Is Adult-Onset Still’s Disease Treated?In people with adult-onset Still’s disease (AOSD), the immune system does not work the way it should. Instead, their immune system proteins cause too much inflammation. Over time, this can... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Preparing for End-Stage Kidney DiseaseEnd-stage kidney disease (ESKD) is when your kidneys are barely working or have stopped working. This condition is also called kidney failure. If you have kidney failure, you will need... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Treating Rare Kidney DiseasesMany rare kidney diseases currently have no cure. However, there are treatment options that can help. There are several factors to consider when creating a treatment plan for a rare... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Signs and Symptoms of Rare Kidney DiseasesRare kidney diseases can affect people of all ages and backgrounds. There are more than 150 different types of these diseases, and each one has unique features. Even the same... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Nutrition and Exercise With Pompe DiseaseRight now, there is no cure for Pompe disease. The main treatment is enzyme replacement therapy (ERT). ERT drugs help replace the protein (enzyme) that is low or missing in... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments