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...reactions2comments
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...reactions1comment
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...reactions11comments
SMS...Does anyone on here have Smith-Magenis syndrome or have family members with it?...reactionsrepliesDiagnosisCopingTips & 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...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...reactionscomments
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...reactionscomments
Multiple chemical sensitivity...I am bothered by smells noises cold and smoke...reactions2repliesCoping
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...reactionscomments
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...reactionscomments
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...
Thriving with a Rare Disease: 5 Personal Strategies for Stress Reduction...Living with a rare disease can be stressful in itself. There's the history of medical trauma, for example, from being put through...reactionscomments
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...reactionscomments
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...reactions1comment
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...reactionscomments
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...
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...reactionscomments
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?...reactions31repliesCoping
Try Walking in My Brace...Life with a bleeding disorder makes getting around a whole lot harder as I age. I have moderate hemophilia and consider myself...reactionscomments
ALS...My 70 year old husband was diagnosed with ALS 1 month ago. He has dementia as well. He doesn't comprehend what's going...reactions4repliesCoping
