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…
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…
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…
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…
Dicen que una imagen vale más que mil palabras. Desplácese a través estas imágenes para una risita. ¿Quién no ama las siestas? Al pensar en lo imposible que era…
Carri Levy’s article about a New Jersey couple John and Amanda Miller, is one of many articles and blogs I’ve read about the Millers; it’s really struck a chord with…
Heather Smith, who is the President and Co-Founder of SCID Angels for Life Foundation, is one tough cookie. Smith has dedicated her life to helping other parents as a result…
Here are my typical evenings with Behcet's disease: I get home from work and, of course, I'm starving. But I'm also exhausted. Some days, I've planned ahead and have an easy…
Editor's note: Ehlers-Danlos syndrome research is constantly evolving. Since the publication of this article, we have covered more types that were not included in this article. To check out a…
Myasthenia Gravis (MG) is a debilitating neuromuscular disease characterized by muscle weakness that gets worse during periods of activity and improves after resting. It is sometime fatal because the muscles…
Listen up, people! This is important—especially if you’re an expectant mother! This article featuring a video in Rare Disease Report, is about an incredible mom named Amanda Miller and her son, Evan. Evan…
Usted no puede siempre estar preparado para una emergencia- que es una especie de oxímoron. Sin embargo, puede pensar en el futuro y poner en marcha un plan de emergencia.…
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