Genetics 101...Our 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 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
Finding a Job That Fits Your Health Needs...Work can be hard when you have a rare chronic disease. Companies generally do not offer as much flexibility as is needed...
Community Members Share Their MAC Lung Disease Experiences...Navigating a MAC lung disease diagnosis can be challenging. There can be a lot of uncertainty and many questions that arise. It...reactionscomments
My Prurigo Nodularis Story...I was diagnosed with the above disease last year. It has a prevalence of around 3/10,000. The aetiology is unknown. It causes...reactions3comments
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
Editorial Team...The Editorial Team works with its Medical Review Board and experienced medical writers to provide Health Union's Community Team with reliable, easy-to-understand...
Hygiene and Chronic Illness: 5 Tips for "Lazy" People...Editor's Note: This article was written by Mikayla Bianchin, a Health Leader living with cystic fibrosis. Read more of Mikalaya's articles at...reactionscomments
How to Handle Insurance Denials and Limits...Finding out that your health insurance company has denied a claim can be frustrating and complicated. Your insurance company must provide you...
Medical Mystery Turned Into a Rare Disease Warrior...Josiah J is a wild spirited two-year-old who has familial cold autoinflammatory syndrome (FCAS). When I was pregnant with Josiah I developed...reactions3comments
Planning a Vacation With a Rare Disease...Summer 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
Michelle Fruhschien...Michelle here- aka Mamabear. My 3-year-old daughter, Hailey, was diagnosed at 8 months of age with a rare diagnosis, Jordan's syndrome, a...
How Exercise Kept Me Out of the Hospital Until I Was 26...Editor’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 Disease...Most 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 Transplant...Not 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 Disease...End-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 Patient...When 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 Transplants...Treating rare kidney diseases begins with medicines and lifestyle changes. These methods aim to treat the underlying causes of the kidney disease...reactionscomments
Terms to Know When You Have Adult-Onset Still’s Disease...Even if you have lived with adult-onset Still's disease (AOSD) for years, new terms can come up often. Whether you are new...reactionscomments
