Life has its obvious defining moments: graduation, our first house or apartment, falling in love and getting married, seeing loved ones pass, memorable trips, finding success, experiencing failure. The list…
With a title about courage, you might think that I am going to write about facing fierce enemies, not running from brutal battles, and boldly standing on blood-stained ground in…
It seems amazing that more than two years have passed since the Ice Bucket Challenge for ALS captivated the imaginations of Americans. Despite all the hubbub around the challenge, let’s…
Courage takes many forms. Most people think of it as a way of facing down enemies or standing on principle. However, a seven-year-old Irish girl named Katie shows her own…
In the rare disease world, getting a correct diagnosis can be akin to playing the lottery. Symptoms often mimic other conditions, and many healthcare professionals have never seen a patient…
If you’ve ever felt overwhelmed by everything going on in your life—finances, job, family drama (save it for your mama)—you have some idea of what mental fatigue feels like. But…
With all the political hocus-pocus that's enveloped the United States over the past year, I'm starting to get "petition burn-out," "marcher's burn-out," and just a general "call-to-action burn-out." This is…
I have a new hero, an Irishman who’s not only gotten some great press and notoriety, this guy has struck gold in the hearts of the Morquio syndrome community! In…
A story I read about a man with ankylosing spondylitis (AS) brought back a great memory for me. A few years ago, I was spending a lonely New Year's Eve…
If you’re like most people (especially me), you’ve never heard of nicotinamide riboside (NR) before. But that may change very soon, especially for the Duchenne muscular dystrophy (DMD) community. What…
Since a young age, many of us have searched for something—a hobby, a passion, a quirk—that "defines” us. Much like the pursuits of Angela Van Batavia, a middle school teacher,…
Life is a reflection of our attitude, and we can learn a thing or two from Alena Galan, a young woman who’s living the dream as a college freshman, hosting…
Alveolar capillary dysplasia, or ACD, is an exceptionally rare disease that seldom has a positive outcome. It begins in the womb when the alveoli capillaries in baby's lungs don't properly…
I just had my yearly physical and something weird (for me) popped up in the blood tests. My cholesterol level was up. Not through the roof, but enough to raise…
I’ve been fat before, but when I was back in 2007, I never felt PHAT—as in “pretty hot and tempting.” So when I read the post about a fabulous, young…
If you're a dog owner, you probably already know just how awesome dogs are. They fill your life with love, loyalty, fur, and plenty to smile about. For one little…
Happy Friday Patient Worthians! What happens when big pharma combines forces? Also, what are you doing in March? We have a conference for you! What are the complications of having multiple…
In sharp contrast to my other two posts recently about the power of humor in living with Cushing’s disease, my heart goes out to another woman, a mom who’s had…
Primary sclerosing cholangitis, or PSC, is a chronic progressive disease that damages the bile ducts. And, if you didn't know, bile is a liquid that assists the body in the…
What if you were born with an enzyme efficiency that prevented your body from breaking down lipids? Then you are probably one in 50,000 people who has Gaucher disease. And…
Patient Worthy quiere felicitar a Lisa D.! Felicidades por lograr la posicion #4 en Amazon Kindle y una calificación de 5 estrellas. Su libro es también # 1 en tres categorías con…
It is more blessed to give than to receive, and one man who lives with glomerulonephritis (GN) knows all too well how helping people and doing a good deed out…
Most people think of children when they hear cystic fibrosis. Thankfully with new treatments and new therapies people are living much longer. This gentleman, named Gary Anderson, is a perfect example.…
It’s tough to be productive in our daily lives when anxiety and worry are dominating our thoughts, and if you or someone you love lives with aplastic anemia (AA), then…
Cuando me uní a otros millones de fans obsesionados que veían lo que ha sido la popular episodio "Bubble Boy" en Seinfeld en 1992, no tenía ni idea de que…
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