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
What Is MAC Lung Disease?...There are many types of lung disease. Some lung problems are caused by genetic issues like cystic fibrosis. Environmental exposures like cigarette...reactionscomments
Asthma and Nontuberculous Mycobacterial (NTM) Lung Disease...An estimated 86,000 people in the United States live with nontuberculous mycobacterial (NTM) lung disease. And the number of people diagnosed with...reactionscomments
What If I Am Resistant to Antibiotics for MAC?...As many as 80 percent of typical MAC lung disease cases can be cured with treatment. However, in some cases, MAC germs...reactionscomments
Nutrition for Lung Health...What you eat can play a big role in your lung health. Maintaining a healthy weight, partly through diet choices, can be...reactionscomments
What Is Mental Health?...Mental health is the range of thoughts, emotions, and behaviors that affect your well-being and how you relate to others. Just like...
What Is Caregiver Burnout?...Living with a chronic condition can be exhausting. Caring for others also can be draining. People with chronic disease and their healthcare...reactions2comments
Finding My Calling...I have always known I was meant to help others. It feels like an intense need to share my light and bring...reactions2comments
Complementary and Integrative Health...Complementary therapies and an integrative health approach are often used to treat mental health conditions. Complementary therapies include nontraditional therapies – such...
Webinar: Moments of Mindfulness – A Patient's Perspective...What do people mean when they talk about practicing mindfulness? What are they actually doing? How much time does it take? Do...reactionscomments
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
