His name is David Fajgenbaum. Although he is now a medical professor, his own journey with health and wellness has been a tumultuous one. His story starts with his time…
Rob is a pretty incredible guy. He is a grade A techie and he is a family man. Rob is living with Acromegaly, a rare disease which is caused by a very…
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…
This post is a follow-up to The Chronic Pain Therapies A-Listers Swear By. If you haven't already read it for an overview of what cupping is and it's therapeutic effects, be sure…
We introduced Patient Worthy's newest and first Contributor living with Cushing's Disease in, On a Mission to be Fit and Fabulous, Meet Liz. This is Part 2 of Liz's official interview. Part…
Cuando la gente oye la enfermedad, la enfermedad, o enfermedad crónica, 9/10 veces piensan en la debilidad. Ellos tristemente sólo lo que ven, pero descuidan del corazón. La verdad es…
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…
It's funny; when you hear the words "diet" and "nutrition," you tend to think salads, vegetables, fruits, and all that good, healthy stuff. But for people with cystic fibrosis, eating…
The FDA told Chiasma Inc. that they needed to conduct another clinical trial to gather more "sufficient data". Despite receiving a complete response letter void of any safety concerns from…
Sometimes, focusing on creating something positive out of your rare disease/chronic illness experiences can help you move forward. Here are 3 ideas for you to think about or try: 1.…
Chronic Pain and the Ancient Art of Cupping For those of you who have enough pills to take, you could talk to your physical therapist like Rob and opt for…
We introduced Patient Worthy's newest and first Contributor living with Cushing's Disease in, On a Mission to be Fit and Fabulous, Meet Liz. This is Part 1 of Liz's official interview. Part…
This model with CF took part in photo shoot for awareness campaign while suffering from pneumonia! Professional model Cassie Hawthorne is acting as the face of a social media campaign…
En el otoño de 1991, Kathy dio a luz a un hermoso niño llamado Isaac. Pero Kathy y su esposo sabían que algo no estaba bien. Isaac era su tercer…
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…
Life just got a little easier for parents of young kids with Tyrosinemia Type I (HT-1) Raising a child with Tyrosinemia requires constant, attention to diet, a special formula, and…
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…
Fundraising isn’t easy. Like, it’s beyond not easy. But when the cause is right, you’ve just got to try. And the Reardons certainly have a good cause. When their son…
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…
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