Elle Cole...Elle Cole is a mom of twin daughters. After she and her husband learned their daughter had sickle cell disease, she wished...
Eating Healthy Without Breaking the Bank...It can be a challenge to eat healthy without spending a lot. And when you are living with a rare health condition...
Building a Rare Disease Treatment Plan Brick-by-Brick...It 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 Mishaps...Although 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 Opportunity...Editor'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 Hypophosphatemia...X-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 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...
Frequently Asked Questions About Mental Health...Mental health includes how you think, feel, and act. It can fall on a spectrum and vary for each person. You may...
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...
Common Tests and Tools for Diagnosing a Rare Disease...Incorrect or delayed diagnosis of rare diseases is common. Because so few people have a particular rare condition, doctors you go to...
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
