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
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
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
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
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
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
What Type of Doctors Treat Rare Kidney Diseases?The kidneys filter extra water and waste out of the blood and make urine. They also make hormones that help control blood pressure and trigger the body to make red...reactionscomments
Dialysis and Kidney DiseaseDialysis is a type of treatment for people who have kidney failure, also known as end-stage kidney disease (ESKD). Over time, people with rare kidney diseases can develop enough kidney...reactionscomments
Questions to Ask Your Doctor About Pompe DiseaseWhether it is you or a loved one who is diagnosed with Pompe disease, you likely have many questions about the condition. Even if you have been living with Pompe...reactionscomments
How Are Rare Kidney Diseases Diagnosed?Many rare kidney diseases cause long-term damage. This damage can cause the kidneys to work less and less well over time. So, early diagnosis is key. The sooner you know...reactionscomments
What Is Adult-Onset Still’s Disease?Adult-onset Still’s disease (AOSD) is a rare type of autoinflammatory arthritis. An autoinflammatory condition occurs when the body’s immune system, which creates inflammation, does not work properly. In people with...reactionscomments
Nutrition and Exercise With Adult-Onset Still’s DiseaseAdult-onset Still’s disease (AOSD) is a rare type of arthritis that can cause pain and joint damage. It is often managed with medicines that work on the immune system to...reactionscomments
