Mastocytosis is a rare immune disorder that is broken down into two categories: cutaneous (CM) systemic (SM) It affects men, women, and children in equal numbers. Children are more likely to have…
When the pituitary gland overproduces growth hormone (GH), its usually because a pituitary adenoma has formed. An adenoma is a benign tumor that causes the patient to continue to grow. Hands and feet…
Gaining 51 pounds in three years may not seem like a lot, but for Amber Mickley it meant doubling in size. When she was nine years old, Amber was small for…
Talk about rare diseases/ disorders/ conditions/ syndromes... there are only seven (SEVEN!!) documented cases of Gorlin Chaudhry Moss syndrome (GCM) in the world. All females. So, does as it come…
Fabry Disease is the number number two Lysosomal Storage disease in terms of numbers affected. It is an X-linked disease, with males passing on the mutated allele to all of their…
Todos sabemos lo que es tener un mal día, una mala semana, o incluso un mal año. Pero la cosa es que, con el tiempo, las cosas suelen trabajar fuera;…
Rare disease mom Bobbie recently had a new baby. While she is overjoyed at the latest addition to her family, she is fearing for her baby daughter's life. Her family…
Have you ever heard of polycythemia vera (PV)? Me neither, and that’s why I had to do some digging. There were quite a few facts that carried some heart-string shock…
As more states open their arms to the wonders of marijuana (for medical purposes and for fun), they're also opening up a whole new way to look at treating rare…
Here at Patient Worthy, we've written a few articles about misdiagnoses and how sometimes, doctors just aren't doing their jobs. But I think it's about time we honor the good…
In honor of liver awareness month, we've got some good news for people living with NASH, or nonalcoholic steatohepatitis. NASH is a kind of fatty-liver disease that is not connected to…
Patient Worthy™ had the unique opportunity to talk to the Coordination of Rare Diseases at Sanford, or CoRDS. Check out the interview below. 1) Can you tell us a little about…
Hay una famosa frase de Harry Potter y las reliquias de la muerte, cuando (* SPOILER ALERT *) Harry habla con el fantasma Dumbledore por última vez. Atrapado en un…
When an arthritis medication can bring hope to so many more... Cystic fibrosis is a disease that affects the respiratory system and also the gastrointestinal system. There are 2 certain inflammasomes, called…
How would you respond if your body did not work for you but against you? What if you felt that your body was actually your enemy? For people with Ehlers-Danlos…
I read a report recently from the New England Journal of Medicine about a clinical trial and thought I’d share it with you because it’s about Fabry disease, a genetic disease…
When I hear the word Parkinson's, the first image that comes to mind is a long-haired guitar player on stage, captivating the hundreds of people who'd come to hear his…
Shocker! Did you know it’s possible to acquire hemophilia? There’s a professor who I’m obsessed with from Texas—that would be “obsessed” as in a healthy obsession! And here’s why: He…
Do you remember your first job interview? I sure do, and it was an experience to remember for sure. Being a recent college graduate, I had attended professional seminars on:…
Si usted tiene un amigo o miembro de la familia que recientemente fue diagnosticado con la enfermedad de Behçet, es el momento de educar acerca de la enfermedad, porque cuanto…
Can you imagine your toddler son having to get a lumbar puncture in order to be diagnosed with a condition that, despite the fact that you've never heard of it, he'll…
If you're reading this, I want you to forget who you are and take on the identity of a doctor, specifically an endocrinologist... starting NOW! GO! The Case A female…
In Himanshu Sharma’s article posted on Onlymyhealth.com back in 2014, it appears that the basics are there. But I’d like to offer my own take since I happen to have…
If you have Maroteaux Lamy syndrome, there's good news and not-so-good news. On the one hand, an understanding of this rare genetic disease has been reached by the medical community.…
I feel like shouting from the rooftop after reading about this 7-year-old girl named Yasmin. After a long hospitalization that spanned several months, she finally got released because her body…
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