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...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
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
Phrenic Nerve Palsy...Two and a half years ago I had acute neck and shoulder pain. This lead to severe dyspnea treated as asthma, but...reactions1comment
ARFGEF-1: Neurodevelopmental Spectrum Disorder...I grew up feeling different. I was told I never felt pain, yet I seemed to know when I was hurt. The...reactions6comments
What to Expect After a MAC Diagnosis...Being diagnosed with MAC lung disease is overwhelming for many people. The good news is that most infections with Mycobacterium avium complex...reactionscomments
Transitioning to Adult Care With Congenital Adrenal Hyperplasia...Congenital adrenal hyperplasia (CAH) is a lifelong condition that affects the adrenal glands, causing hormonal imbalances. For those with CAH, moving from...reactionscomments
Starting a Family When You Have Congenital Adrenal Hyperplasia...Congenital adrenal hyperplasia (CAH) is a genetic condition that can affect people of any sex. This is a rare condition that can...reactionscomments
Applying for Social Security Disability Benefits...Living with a chronic health condition may make working impossible at some point. Your symptoms can affect your ability to get your...
Disability Benefits...When you have a chronic medical condition, there may be times when you are not able to work. This can seriously affect...
Workplace Considerations...Everyone deserves to be treated fairly at work, including people with chronic medical conditions or disabilities. It is not only the right...
Resources for Veterans, LGBTQ+ People, and Other Special Groups...Coping with a chronic health condition can be challenging for you, your family, and your caregivers. You rely on your healthcare team...
Managing Healthcare Expenses...Managing a chronic health condition can take a financial toll on you and your family. Costs add up quickly from medicines, testing...
Health Resources...Living with a chronic health condition can be challenging, frustrating, and tiring. You might feel like your life is on hold. Frequent...
Navigating Overnight School Trips When Your Child Has a Rare Disease...As a parent of a child with 2 chronic conditions, preparing my daughter for an overnight school field trip without me was...reactions2comments
Early Intervention Gave Me Hope...When I first heard, "Your child has a global developmental delay," my heart shattered. At 22, a new and young mom, I...reactions1comment
Calling Out with Grace...I try to approach life by considering others' perspectives, not just mine. Sometimes, though, I fail at this. As a rare disease...reactions5comments
My Child May Have a Rare Disease, but I Still Dream Big Dreams for Her...15 years ago, I became the mother of a daughter who lives with a rare disease. My daughter has a rare disease...reactions3comments
How to Deal With Letdowns in Your Awareness Efforts...As I shared in a previous article, rare disease advocacy can include writing and requesting proclamations. Proclamations can be made by organizations...reactionscomments
Rare Disease, Death, and No Clear-cut Answers...I have been fortunate to have my mother and grandfather to share my rare disease journey with me, as one of our...reactions2comments
