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…
New therapies have increased the likelihood of a longer life with cystic fibrosis (CF). A few decades ago, it was not common for children diagnosed with CF to live past…
Here at Patient Worthy, we chronicle the news, issues, and stories affecting people living with or impacted by rare diseases. While the symptoms and mechanics vary from disease to disease…
Does the name Ludwig van Beethoven ring a bell? It should. He was one of the greatest composers the world has ever seen. He also suffered from cirrhosis of the liver, infectious…
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…
Recently, my boyfriend and I were looking at places to go on vacation before he gets deployed. He wants to travel internationally because this is his last chance for a…
We want to celebrate our patient contributors and writers for their efforts in helping the rare community, bringing awareness, understanding and compassion to often neglected disease. The following article was originally…
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,…
When I was 15 and received my learner's permit, they asked if I'd like to be an organ donor. I was a little freaked out at the image of getting…
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…
We want to celebrate our patient contributors and writers for their efforts in helping the rare community by bringing awareness, understanding and compassion to often neglected disease. The following article…
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…
Update: In June of 2016, we had the pleasure of interviewing Aleeya Young, an amazing teen with CF. Well, this Sunday she will be receiving a $10,000 2016- 2017 Sacks for CF…
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…
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.…
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