Upcoming event made possible by the MDS Foundation! Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver, this event will give you the opportunity to learn…
In reading about various diseases, I sometimes find that the content reads like alphabet soup. Sometimes, it’s helpful to simplify and clarify. To get down to the basics. April is…
Welcome back Patient Worthians! This week we have some exciting news for the MS community. Additionally, we have some great tips on how to build your CF dream team. Also,…
Inspiration is something we all need from time to time. Feeling down? Lost your way? Bored? Perhaps you’ve taken a knock and feel rather negative about life. Whatever you feel…
Everyone has problems. That’s part of life. In fact, we have that old phrase, “That’s life.” Usually, people whip out said phrase whenever something doesn’t go the way they want…
The Tuberous Sclerosis Alliance works to bring awareness to tuberous sclerosis complex (TSC). They also work to raise funds for TSC. Over the years, some of the greatest in the…
The tick bit Margie when she was 10, marking the start of a battle with Lyme disease, a battle that continues to this day, into Margie’s 50s. Hers is a story…
Here's some good news for the day: According to nutritionist Dr. Keith Pearson, there is ample evidence that cinnamon helps to lower blood sugar and fight diabetes! Let's go over…
Vertex Pharmaceuticals announced that two phase 3 studies involving a combination of tezacaftor / ivacaftor improved the lung function in cystic fibrosis patients that are 12 and older, with the F508del…
While most people with hemophilia are men, everyone should be more aware of what it is. Women have the potential to be carriers if the disease runs in the family.…
If you haven't yet, check out our post here on how cinnamon can help lower your blood sugar. And to that point - spices are the very embodiment of "big…
Royalty, murder, lots and lots of blood – sounds like elements from the plot of a Victorian-era thriller. Actually, this story comes straight from hemophilia history. Science Magazine published a…
How long can you live without your heart? How long without your liver? Your spleen? Your lungs? A woman in Canada learned the answer to that last one. Melissa needed…
The image of a scientist conducting research on himself is a plot element in most superhero stories, as well as the classic Robert Louis Stevenson novella Strange Case of Dr.…
The artist's medium? Wood, mirrors, and various other materials. His art? Jarring and beautiful headpieces—Tiago Valente's way of understanding his own experience with dystonia. Tiago called it facial dystonia, and from…
He wrestles, plays football and enjoys the day-to-day activities many 14-year-old boys would. Unlike many 14-year-olds, Drake was diagnosed with SoJIA, or systemic-onset juvenile idiopathic arthritis. “I have yet to…
In two weeks, Ocrevus will be available to those suffering from both relapsing-remitting Multiple Sclerosis (MS), the most common form, and primary progressive MS, which affects about 10 to 15…
Alright, here's a little secret. Don't tell anyone, okay? Promise? Great, here it is: Carbs are delicious. I mean, so so so good. And throughout the last few decades we've…
What would you do if you felt an overpowering urge to nod off? For most people, I think we would just go to sleep. It’s relatively easy to find a…
The World Alliance of Pituitary Organizations unites the pituitary patient community and as one of our partners, they sent us their latest newsletter! In it, you can read the chairperson's report,…
When your child is diagnosed with Tay-Sachs, what should you do? How should you cope? A baby with Tay-Sachs disease appears healthy at birth and seems to be developing normally…
You want to know what one of the important things a parent or caregiver for someone living with cystic fibrosis (CF) can do? It’s accept responsibility for managing the patient’s…
Have you ever felt woozy when you stood up? And maybe it was so bad you actually fainted. One possibility is you have a form of dysautonomia called postural orthostatic…
Huntington's disease (HD) is one of those rare diseases that prior to diagnosis feels like a coin toss. Will you get it? Will it pass you by? It's a genetic…
Some memories come to mind so vividly you remember every sensation: the smells, the sights, the sounds, the feelings. For me, many of my most vivid childhood memories involve the…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
