"What's Up, Doc?" What the Doctor-Patient Relationship Means to MeYour relationship with your doctor can have a big impact on your health. Since your doctor is a key member of your...reactionscomments
Building a Rare Disease Treatment Plan Brick-by-BrickIt can take years to build an effective treatment plan to treat a rare disease like narcolepsy. I know this from my...reactionscomments
Some of My Most Absurd Rare Disease MishapsAlthough hilarity is not often associated with a rare disease, I'm glad I can laugh off a lot of the indignities that...reactionscomments
Landing the Right Advocacy OpportunityEditor's Note: This article was written by Wunmi Bakare, a Health Leader living with sickle cell disease. Read more of Wunmi's articles...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
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...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...reactionscomments
Genetics 101Our genes are like a recipe book for our bodies. They tell our cells what to do, how to grow, and how...reactionscomments
How I Start Difficult Conversations About My Rare DiseaseWhen living with a rare disease, setting boundaries around physical limitations is important. As a person with narcolepsy, I've had to learn...reactions11comments
Community Members Share Their MAC Lung Disease ExperiencesNavigating a MAC lung disease diagnosis can be challenging. There can be a lot of uncertainty and many questions that arise. It...reactionscomments
When There’s a Shortage of the Medicine That Keeps You AliveI need 2 medications to survive. I don't mean it in the sense that my health would deteriorate faster. And I don't...reactionscomments
Hygiene and Chronic Illness: 5 Tips for "Lazy" PeopleEditor's Note: This article was written by Mikayla Bianchin, a Health Leader living with cystic fibrosis. Read more of Mikalaya's articles at...reactionscomments
Planning a Vacation With a Rare DiseaseSummer is here! Time to travel to new places, experience local cuisine, and have some fun in the sun! Okay, easier said...reactions2comments
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...reactionscomments
How Exercise Kept Me Out of the Hospital Until I Was 26Editor’s Note: This article was written by Megan Barlow and originally appeared on our Cystic-Fibrosis.com community. I have always been active. Since...reactionscomments
Living With a Rare Kidney DiseaseMost rare kidney diseases last a long time. There is no cure, and they often do not go away on their own...reactionscomments
5 Practical Tips to Thrive After a Kidney TransplantNot long after receiving my kidney transplant, I remember sitting on my couch, majorly uncomfortable and in pain after making the slightest...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...reactionscomments
Yes, You Can Travel as a Dialysis PatientWhen I got the news that my kidney function had diminished to the point that I needed dialysis, my heart sank. I...reactionscomments
What to Know About Kidney TransplantsTreating rare kidney diseases begins with medicines and lifestyle changes. These methods aim to treat the underlying causes of the kidney disease...reactionscomments
