Tuberous sclerosis complex (TSC) is a rare genetic disease. It causes tissue to form abnormally in patients at a young age. Different organs are affected by it, meaning that symptoms…
What is carcinoid syndrome? This syndrome is caused by tumors that grow in the mucosa of the gastrointestinal tract. It occurs in people who have carcinoid tumors, although not all go…
A firefighter, also known as a fireman, is a highly skilled man or woman who works to combat and extinguish fires. They also take steps to prevent fires, act as…
“Knowledge is Hope” is the motto of the Mesothelioma Applied Research Foundation and it could not be more true. While mesothelioma can be a terrifying diagnosis, researchers have made great…
You’ve heard the expression, “What’s in a name?” How about, “What’s in a number?” September 7 is World Duchenne Awareness Day. It occurs on that day every year because the 7th…
Anyone can tell you that life sometimes wears us down. With so much to do and too little time, we sometimes find ourselves running on inadequate sleep and Starbucks lattes.…
With fishing and summer recreation seasons just around the corner, you could be exposing yourself to Lyme disease and not even know it. You might become just like one mother…
Ehlers-Danlos syndrome (EDS) is incredibly diverse in its symptoms, and most of the time patients don’t have all of them at the same time. Additionally, it’s a spectrum condition so…
Glanzmann's thrombasthenia (GT) is an inherited autosomal disorder that begins at birth. It causes prolonged or spontaneous bleeding and affects one out of one million people. Patients tend to bruise easily and…
Few things are scarier in life than dealing with a sick child. But for some parents, that fear is compounded into a living nightmare when they are told their child…
Kyrus Rogers a former security guard was supposedly misdiagnosed when an emergency room physician apparently failed to run diagnostics for transverse myelitis (TM). Rogers, once a healthy, athletic 30-something, is…
The scenario is much more common today than in years past. A patient who doesn't abuse alcohol or have chronic hepatitis is admitted to the hospital, many times the ICU,…
Want some more news, events and announcements on Sickle Cell? We got 'em! [one_half] [/one_half] [one_half_last] Brazilian Researchers Propose Classification of 3rd Sickle Cell Subtype SAFE Treatment for…
Happy Memorial Day Weekend Patient Worthians! This week we have an inspiring interview with the CEO and Founder of the Hereditary Neuropathy Foundation. We also have a motivating story on a cheerleader battling Friedreich's…
A little pain usually is a good thing. It's our alarm system. It's our body's way of saying, "Hey, that's hot... Get away before it hurts you!" However, when the…
First, there was the saltine cracker challenge, which allegedly has its origins at the University of Tennessee with Peyton Manning making a bet. Then came the Sprite and banana challenge…
I know, we’ve all heard it a million times before. A good night’s sleep is essential for optimal health. However, as much as we love sleep, it’s easy to get…
I’m a big fan of questions. All my life, I’ve asked questions and looked for the answers. Sometimes I’ve found them, and sometimes not. What I now realize, after many…
Guillain-Barre Syndrome is a rare disorder that attacks the body’s nervous system. For anyone who has gotten Guillain-Barre Syndrome, the symptoms begin swiftly. It causes paralysis and symptoms typically begin…
Want some more news, events and announcements on SCID? We got 'em! [one_half] [/one_half] [one_half_last] The Expense of Scientific Progress: The Price of Gene Therapy for SCID The…
Rare Disease patients tend to be tremendously aware of every aspect of our lives; our under-treated diseases, our lack of social support and our own coping mechanisms. We need more…
Here’s some important information that everyone considering having children should know because they could potentially pass primary carnitine deficiency (PCD) on to their children. PCD, also known as carnitine transport…
You recently learned that your child has inflammatory bowel disease (IBD). Now you’re taking an important step: learning about the condition, how it’s treated, and how your child can learn…
Homocystinuria is an extremely rare disorder. It is estimated that only 1 in 344,000 people in the world have it. Homocystinuria is a genetically inherited. This means the child’s parents…
Children need exercise. Not only for the health benefits but for the social benefits too. Playing games like hide-and-go-seek and tag, and participating in community sports like soccer and swimming,…
© 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.
