Knowing you’re not alone and connecting with others who share the same experience with Dravet syndrome can be incredibly valuable. Parenting a child with such a specific set of symptoms…
Prescription drugs have always been overly expensive but there's now hope for these prices to drop down. On Tuesday morning, the Senate Health Committee held a hearing to discuss the…
Every year, hundreds of people in America are infected with babesiosis, a tick-borne infection that causes malaria-like symptoms. For some reason, older white men have the highest rates of infection.…
Causation vs. correlation. What does that even mean? If you ask your friend who majored in philosophy for a semester-and-a-half in college, you’ll probably get an explanation that sounds more…
It's been a tough year for the United States Congress and healthcare legislation - you might have heard, they failed to repeal and replace the Affordable Care Act nor have…
Quite possibly, one of the most challenging attitudes to embrace is self-compassion. It should be easy enough to adopt simple self-love into our lives, but it truly is where the…
“Don’t fight the problem, decide it.” George C. Marshall was not known for backing down from any fight. It was most certainly drummed into him from his military training, but…
Stepping on a Lego—that piercing pain is familiar to just about everyone, and it hurts an unreasonable amount. You step on other things all the time, but Legos seem to…
According the Cystic Fibrosis News Today, when Claire was first born, she was only expected to live to the age of 10. Then Claire’s life expectancy lengthened to 18, and…
The concept of “race” occupies a perilous crossroads at this moment in American history. Some would argue that we live in a “post-racial” world since the election and re-election of…
There are certain doctor’s appointments that I dread. The top three appointments that can cause me to lose sleep include annual OB/GYN visits, mammograms, and eye exams. For me, my…
Right up front, I'll admit I’ve done this: You’re in a parking lot looking for a parking space when you pass a handicapped spot. You see the placard that gives…
I wouldn’t exactly call myself a meditation guru. I was first introduced to the concept of meditation after a class on Buddhism in college. I attempted to mediate for several…
They say that technology has made life easier, faster, more comfortable, and on and on and on. Who this “they” is, I don’t know. While technology has made certain parts…
Even good things can be bad in excess. I was always taught that moderation is the key in all things. Is it ok to drink that glass of wine? Yes.…
I recently got together with a sweet friend, who has a six-month-old. It was the first time we'd actually talked face-to-face since her daughter was born, and the first time…
Imagine your father has just suffered a heart attack and must undergo open-heart surgery in order to repair the damage... Picture your baby niece or nephew was born with a…
Few things are as frustrating and complex as the health care system in the US. Even the current President admitted to that fact. So, like many people in the rare disease…
The line between genius and madness is often closer than people realize. Don’t tell Dr. Sergio Canavero that he can’t help his patient with spinal muscular atrophy (SMA). How many…
The term “superfood” is thrown around a lot. It is used for everything from salmon to spinach, from pistachios to pumpkin, from chia seeds to quinoa. When people use the…
One of the hardest parts of living with a rare or chronic condition such as hereditary angioedema (HAE) is being told “but you don’t look sick!”—even when you feel like…
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…
Living in fear—I don’t know how some people do it. I’m not talking about the shrieks from bugs or snakes. God, both of them freak me out. I’m not referring…
Cystinosis breaks my heart. Why, you may ask? Because it robs children of their childhood. I'll explain in a moment--but first, let me give you a general overview of the disease.…
Here in the United States, we tend to put doctors on a pedestal. So much so, many of us experience a rise in blood pressure in the office. There’s even a…
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.
