Kudos to the BBC for their documentary: Employable Me for bringing to light the plight of people living with Tourette syndrome (TS)! Tourette syndrome is seriously stigmatized, which adds layers of…
While Trey Finomore, a preteen from Colorado, was visiting family in Ohio, his parents noticed he was collecting a lot of bruises. Most of the time, it's expected kids will…
No soy un fan de la televisión de la realidad. Pero yo soy un fan cojonudo de Yolanda Foster, un ama de casa real de Beverly Hills. Aunque ella y…
PatientWorthy se ha unido a CysticLife.org para poner de relieve algunos de los miembros de su comunidad increíble! CysticLife.org surgió de un blog iniciado por CF paciente, Ronnie Sharpe, para…
Linus from the "Peanuts" comic strip is infamous for carrying around his security blanket while sucking his thumb. It is this same idea of a comfort object that has soothed…
Inspiration is important because it provides us with a glimpse of the fact that we can be great. But inspiration is not what fuels change, inspiration is fleeting. It’s what…
In the midst of an ugly American presidential post-election, I am actively looking for inspiration to distract me from this mess. And man, was I lucky! There’s a gal who’s living…
Mahatma Gandhi taught that we should endeavor to be the change that we wish to see in the world. (I believe Gandhi may have been on to something). I'm wondering…
We all need to be able to turn to family and friends when we've got a problem. There is a strong link between the support we receive and our well-being. It…
How many of us are guilty of spending countless hours just scrolling through Facebook? I know I'm guilty of that. Just checking out pictures and watching videos. It's great to see…
When you live with a life-changing disease like myasthenia gravis, or MG, it’s normal to feel down or have difficulty adjusting to the loss of control. For many, it’s easy…
I just watched a YouTube video, posted by a sweet red-headed, freckly-faced teenager, who is living with neuromyelitis optica (NMO). NMO is a rare autoimmune, demyelinating disease that attacks people…
Some disease processes shout at you- dramatic symptoms bring you immediately to medical care and treatment. However other unhealthy biological processes are more subtle and are likely to go undetected…
This community has come together in a big way to support a local family. Eric Frisbee and his wife, Julie, have two daughters that are living with cystic fibrosis. They…
Holy. Frickin’. Crap. I’m going to admit right off the bat: I know less than nothing about mixed martial arts in general and the UFC in particular. I wouldn’t know…
Children can be cruel. It's an age-old saying. I don't feel it excuses the behavior, but it is often offered up as a reason for the seemingly heartless behavior children…
At this time last year, I was 89 lbs and at the beginning stages of recovery from a year of IV and oral antibiotics for the treatment of Lyme disease.…
Having a rare disease is exhausting on so many levels. The pain, the lack of sleep, the lack of money, the doctors’ appointments… Where is the fun and the spontaneity?…
So…I just found out that apparently time travel is not something you can ACTUALLY do. There go all of my carefully-laid plans for what I want to be when I…
The physicians who left me undiagnosed said "we" missed the brain tumor. WE?! YOU, the 10 or 12 doctors I saw, missed that I had acromegaly. The doctor who finally…
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…
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…
Let's talk about medical marijuana for a moment. As soon as the word "marijuana" is introduced, people automatically think of users being "stoned," or they think of the fabled hippie…
Candace recogió sus cartas, lanzaron "Oceans" en el fondo, y se presiona el juego cuando comenzó a grabar un video explicativo de su rara enfermedad, con frecuencia mal entendida, variable…
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