Living With X-linked Hypophosphatemia...X-linked hypophosphatemia (XLH) is a rare genetic condition that lasts a person’s entire life. It is caused by a mutation in the PHEX gene that prevents the body from using... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 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 laterReactions0reactionsComments0 comments
Misconceptions About My Rare Disease...It'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... By Jessica Hanson3 min readBookmark for laterReactions0reactionsComments0 comments
Disability Pride Month With a Rare Disease...Disability 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... By Natalie Abbott2 min readBookmark for laterReactions0reactionsComments1 comments
How I Start Difficult Conversations About My Rare Disease...When 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... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments11 comments
SMS...Does anyone on here have Smith-Magenis syndrome or have family members with it?...Reactions0reactionsComments0 repliesDiagnosisCopingTips & Advice
What to Know About Newborn Screening and Rare Diseases...Newborn 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 laterReactions0reactionsComments0 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 laterReactions0reactionsComments0 comments
When We Medically Gaslight Ourselves...We'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... By Jenny Jones2 min readBookmark for laterReactions0reactionsComments0 comments
Multiple chemical sensitivity...I am bothered by smells noises cold and smoke...Reactions0reactionsComments1 repliesCoping
Facing a Terminal Illness...Being 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... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
Questions to Ask Your Doctor When You Have X-linked Hypophosphatemia...Receiving 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 laterReactions0reactionsComments0 comments
Gina Miller...Gina is an advocate for late-diagnosed cystic fibrosis (CF) patients, and CF related-disorders, plus various other disorders she has been navigating along her healthcare journey. As a senior with multiple... By Editorial Team 1 min readBookmark for later
5 Ways I Reduce Stress With a Rare Disease...Living 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... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments0 comments
X-linked Hypophosphatemia and Genetics...X-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 laterReactions0reactionsComments0 comments
Community Views: The Most Annoying Unsolicited Advice...If 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... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments1 comments
When There’s a Shortage of the Medicine That Keeps You Alive...I 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... By Annie-Danielle Grenier4 min readBookmark for laterReactions0reactionsComments0 comments
How Is Hereditary Angioedema Treated?...Hereditary angioedema (HAE) is a rare disorder in which a person has recurring, severe swelling. This swelling takes place in the arms, legs, intestines (gut), airways, and face. HAE can... By Editorial Team 2 min readBookmark for later
Signs and Symptoms of X-linked Hypophosphatemia...X-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 laterReactions0reactionsComments0 comments
What is the most annoying unsolicited advice you've heard?...What annoying or unhelpful suggestions are you most tired of receiving (unsolicited!) from other people?...Reactions0reactionsComments21 repliesCoping
