Author Douglas Adams once said, “I love deadlines. I like the whooshing sound they make as they fly by.” Deadlines are a strange thing. Sometimes, a doctor will give you…
Approximately one million people worldwide have been diagnosed with tuberous sclerosis complex (TSC), a condition where non-cancerous tumors and other lesions grow most commonly in the kidneys, heart, lungs, skin and…
If you or your loved one has cataplexy, I definitely suggest you read this post, written by a young woman who’s living with it. I say “living with it” vs.…
What comes to mind when you hear "palliative care?" Most people might think it only helps someone with end-of-life care. But did you know that palliative care can actually lift spirits…
Jamie has been living with Tourette syndrome, so bad that she was not able to perform many of her daily activities. She would often avoid going to places outside of her…
The U.S. Food and Drug Administration (FDA) is quite an impressive agency. They regulate the safety and security of all foods that are produced, imported, or created in any other…
Caregivers or care partners are often family members or friends who provide important physical, practical, and emotional support to a person with health issues such as sickle cell disease. Caregivers…
The Sjogren's Syndrome Foundation wants to spread awareness on this condition. The Foundation, alongside its members and volunteers, wants to use its platform to educate people about the Sjogren's syndrome.…
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…
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…
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…
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…
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…
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…
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…
Suzanne Burt’s daughter Sofia, was diagnosed with gastroschisis while in the womb. Gastroschisis is a rare birth defect where the digestive organs are developed outside the stomach. Suzanne believes that her…
Diamond-Blackfan anemia (DBA) is a bone marrow failure disorder that is inherited, but very rare. It was named after Dr. Louis K. Diamond and Dr. Kenneth D. Blackfan, who were the…
Approximately one in 5,000 babies are born with a birth defect called gastroschisis. When a baby's intestines are protruding through a hole in the stomach wall resulting in the intestines being…
Let's talk blood donation. I recently spoke with a man from a small African country who suffers from hemophilia. He told me that when he was growing up, there was no…
© 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.
