When you have a rare disease, your money goes to a lot of different things that people without health problems don't have to cover. Like medicine. Or therapy. Or hospitalizations. Or...…
Let's be real... it personally offends me that Raptor Pharmaceuticals' logo isn't a velociraptor. Like, that is a missed golden opportunity. I'm just saying... there are a lot of drugs out…
What are parents’ hopes for their children? Typically a happy, successful and long life. Children are often asked what they want to be when they grow up... but the growing…
Happy Almost Mother's Day Patient Worthians! This week is PACKED with announcements. First of all, it's Lyme disease Awareness Month, Cystinosis Awareness Month, Cystic Fibrosis Awareness Month, and Behcet's Awareness…
Strapped for cash after a cystinosis diagnosis? Listen to this! There is a scholarship available to lighten the load of families who are dealing with the challenges that accompany cystinosis.…
Ankylosing spondylitis is a rare, autoimmune disorder. It is a chronic form of inflammatory arthritis that primarily affects the base of the spine, bones and joints. It has also been referred…
Michael J. Fox was the known for years as the teenage financial wizard on the television series, Family Ties. Later he went on to become a time traveling teen in…
The steely visage of our seventh president Andrew Jackson will disappear from the face of the $20 bill. Yes, “Old Hickory” has been fired from top billing on the venerable $20 note…
It's that time of year, again, folks. Yep, it's time to CHECK FOR TICKS! These tiny little predators can pack quite a wallop if you get hooked up with the…
Finding treatment for a rare disease like CVID can feel like a dice roll. How can you find an effective treatment if doctors don't know exactly what's wrong with you? Dr. Harry…
Becoming a parent can be exciting and terrifying in nearly equal measures—along with the thrill, anticipation, and joy, there’s the fear of what could go wrong. Worrying about your child’s…
There are lots of things you want to pass down to your kids: Intelligence Athletic ability Creative talent Amazing good looks Pompe disease isn’t one of them. Pompe disease occurs…
Congrats Patient Worthians! You made it to Friday! This week we have some interesting Myasthenia Gravis pain remedies. Additionally, we have a pretty sweet Acromegaly poster designed by one of our…
Each step with dystonia can feel like a marathon. As it turns out, some people in the community mean that literally. Marathons—the 26.2 mile behemoths—have become a worldwide phenomenon. The TCS…
When most of us think of breathalyzer tests, we picture flashing lights, police officers, and stern discussions of how fast we were driving (…or is that just me?). But of…
Have Lyme disease and want to to learn more about it? What about meeting other people with Lyme disease? Sound like something you're into? Come out to the 10th annual Lyme…
Pulmonary arterial hypertension (PAH) is a form of high blood pressure affecting the arteries in the lungs and the right side of the heart. The disease is characterized by increased blood pressure…
Premature babies have enough to deal with. Not only do they face the possibility of long-term health problems like impaired cognitive function, behavioral/psychological problems, and cerebral palsy, they first need…
Imagine your child is stuck at the bottom of a long transplant waiting list when he or she desperately needs a new liver. The thought is terrifying--and for many, terrifyingly…
Common variable immunodeficiency, or CVID, is anything but common; it affects about 1 in 20,000 people. It is, however, characterized by a deficient immune system and can present a wide variety…
A guy walks into an emergency room. He tells the doctor, “I’ve got abdominal pain. Can you help me with my (IBS)?” The doctor shakes her head and says, “No, but…
Nobody ever asks for a diagnosis, much less, expects it. But if you find yourself struggling to accept less-than-ideal news, it doesn't hurt to be informed. Here are five questions…
For the Rust family, 2015 was challenging—challenging in ways they never thought imaginable. Why? Because this past year, their eight-year-old son Jourdin began displaying peculiar symptoms—extreme weight loss, in particular—which started…
If you recall, here at PatientWorthy, we've talked a lot about "newborn screening." In case you missed it: What Every New Mom Should Know About Tyrosinemia What Every Pregnant Woman…
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