Breastfeeding is a pretty loaded topic in the world of moms. There’s a certain pressure to breastfeed since research suggests it’s better for your baby and what mom doesn’t want…
Patient Worthy had the privilege of speaking with Vicky, who shared her story of being diagnosed and living with sarcoidosis. My case was outside the ‘normal’ perimeters because I was…
It's easy to identify the times when a medical condition works against us. In the case of acromegaly, people may experience: fatigue, muscle weakness, severe pain, limited mobility, impaired vision,…
"From belonging to an healthiest elite organisation to being hit by a rare disease is a leap which is not easy to accept." What is it about stories? Why do…
How would you feel if someone you love, someone you care about more than anything else in the world, needed brain surgery to remove a tumor and, right as that…
Imagine being 16 years old, and instead of meeting cute girls, going out with friends, and going to parties that get busted, you have to manage a rare, chronic condition…
Most people know that high cholesterol is a ticking time bomb, and that it’s important to eat heart healthy foods low in saturated fat and cholesterol. Public health awareness—and the…
Kim Pimley is a mover and shaker, a businesswoman on the go. She’s one of those energetic people you see running up an escalator, to save time, and also, just…
Kallman syndrome is a condition in which puberty is delayed or completely absent from the individual. According to the NIH, it effects just one out of every 10,000 to 86,000…
Emma Gaul’s story is a good reminder of how quickly life’s plans can change when your body turns against itself. Less than two years ago she was a vibrant and…
My brain is CRAZY! At least, that’s the way I feel. I cannot explain how infuriating it is to have what I refer to as, a dystonia brain! So, what’s…
When I was 14 or 15 years old, my father was deployed and the family was a little anxious say the least. That's why, when I woke up one spring…
The dream of starting a family is one of our strongest biological urges, as well as a common thread that runs throughout humanity and history. Sadly, not everyone who wants…
There is currently no cure for most chronic health conditions so treatments are focused on reducing symptoms. I live with a condition called dystonia, a painful neurological movement disorder. Like…
Fifty years ago, a baby born at 22 weeks didn't have a very significant chance for survival. It wasn't until the early 1970s that specialized equipment was developed to take…
Like most little boys, six-year-old Maddox Klossner loves being outside and in constant motion. Maddox has cerebral palsy as well as a form of epilepsy called Lennox-Gastaut Syndrome; both conditions were…
To all the people with narcolepsy out there: how tired are you of having people make light of your condition? The jokes, the playfulness, the jabs—it all gets a little…
Cualquier persona diagnosticada con una enfermedad crónica tiene dos opciones. Opción 1: Vive la vida sin hacer nada y esperar a que llegue el final O Opción 2: Aprender lo…
Do you know how rare diseases are classified as such in the United States? If a disease affects 200,000 people or fewer, it is considered "rare." Acromegaly, cystinosis, and Gaucher…
"You'll be fine. You're just depressed." How many times have you heard a doctor tell you that—when you KNOW something is seriously wrong? Marilyn heard the exact same thing. "I ain't…
For a disease affecting so few people, amyotrophic lateral sclerosis (or ALS) has a somewhat higher than normal profile. That’s due in small part to the ubiquitous “Ice Bucket Challenge”…
When people are diagnosed with amyotrophic lateral sclerosis (ALS), it’s overwhelming for both patients and their loved ones because it does not discriminate and can strike at any time. This…
Some illnesses elude even the most educated and experienced medical professionals. Yet, no matter how rare their disease, people need to be diagnosed quickly for an accurate treatment plan to be initiated.…
When diagnosed with idiopathic pulmonary fibrosis (IPF), physical activity is pretty much out of the cards. Or is it? With IPF, heavy scarring in the lungs hardens the tissue and makes…
Despite what strangers and acquaintances seem to think, I’m not a positive or even particularly friendly person. I rarely, if ever, look on the bright side—I don’t even consider literal…
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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.