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…
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…
Attention! A Sjögren’s Support Group will be meeting in Ohio. This meeting will take place February 12th from 12:00 pm-2:00 pm at Flower Hospital in the Conference Center Building, 5200 Harroun Road,…
Genetic testing for Spinal Muscular Atrophy (SMA). Most US-born newborns are undergo testing to find out if they have certain genetic conditions. These tests vary from state to state. There…
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…
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.…
When we are faced with a limiting health issue where performing "simple" everyday activities becomes a challenge, our self-confidence and self-worth can dwindle. This can happen with any health condition…
We can all say that our mothers gave us the gift of life. But how many can say that they gave the gift of life in return? One teenager in…
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…
Duchenne Muscular Dystrophy (DMD) is a degenerative disease that causes muscle weakness in the hips, thighs, shoulders and then later, in the heart and respiratory systems. This Australia family is…
Myasthenia gravis is a chronic neurological autoimmune disorder that causes weakening of the voluntary muscles in the body. The most frequently affected muscles control eyelid movement, swallowing, and facial expression. In the…
February is Black History month and for the first week, Old Ways, a site dedicated to promoting good health through cultural foods, is celebrating with health foods! If you're like…
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