Short bowel syndrome, or SBS, results from the surgical removal (or resection) of part of the bowel. Reasons for this type of surgery vary, and include congenital defects or injury to…
Imagine being healthy one day, then hospitalized the next, and your way of life irrevocably changed? For many people with short bowel syndrome (SBS), that is exactly what has happened…
Puedo parecer "bien" para que en el exterior, pero lo que estoy experimentando en el interior no es "fina". Tengo un par de diferentes formas de una enfermedad incurable llamada…
The Narcolepsy Article of Your Dreams Some people would give anything to be able to get take a nap or just fall sleep whenever they wanted to. But that is…
dolor colosal. hinchazón de mamut. Hipersensibilidad. Los cambios drásticos en la temperatura corporal. Imagínese estar en ese tipo de dolor todo el tiempo. Francamente, suena un poco como una pesadilla.…
"Every moment on this earth is an extraordinary, destiny defining gift from God." –Billy Cox Happy Thanksgiving Patient Worthians!
"As Long as you're still breathing, There's still a purpose for your life." - Billy Cox I find these words very inspiring and comforting. Even when you question why you…
Have you been looking for a treatment for factor XIII (FXIII), or fibrin stabilizing factor, deficiency? You may be among the estimated one in 3 million people suffering with lifelong…
Si las enfermedades raras estaban participando en un concurso de belleza, donde la "belleza" significa "poco conocido", "mal entendido", y "casi imposible de diagnosticar" -Ehlers-Danlos (EDS) sería a la altura…
Let's take a stroll down memory lane to gain some perspective on Tourette’s syndrome… Years ago, when the famed comedian and director, Larry David, produced an episode of Curb Your Enthusiasm, which…
I was sitting across the table from my biology study partner on a Saturday afternoon, when I noticed he was awfully quiet all of a sudden. I looked up from…
Ah, I remember the simple times, when all you had to worry about was tracing your hand with a crayon and color in a turkey. Now I am an adult…
Carcinoid tumors are very rare tumors that develop slowly in the digestive tract or in the lungs. In its early stages, there are no symptoms, but as the tumor gets…
Básicamente todo el mundo ha visto afectada por los altos costos de la atención médica en algún momento de su vida, y para muchos, no mucho cambió cuando Obamacare (Affordable…
Let's talk cholesterol—the bad kind, 'cause there're different kinds. LDL cholesterol, or low-density lipoprotein cholesterol, is the kind you DON'T want, because it can lead to a whole host of…
A few months ago, I went on a rant about the FDA's failure to approve a drug that would benefit children with Duchenne muscular dystrophy, or DMD, a muscle-wasting disease.…
My cousin, Richard, lost his sight to retinitis pigmentosa when he was 35 years old. He adjusted considerably well due to his vision loss being so gradual. He had already…
Over the past few months, I’ve been trying to support my dear friend Julie, as she cares for and mothers her child, who was recently diagnosed with transverse myelitis (TM).…
No hace mucho tiempo, leí un artículo sobre la lucha heroica de un padre para luchar contra la injusticia de su hijo que está viviendo con una enfermedad autoinmune genética…
What do we deserve? If we're unwilling to take care of ourselves, should we expect others to take care of us instead? For example: If we're eating large portions of unhealthy…
Being that the month of November is upon us (can you believe it?), I want to take a moment to express what I'm thankful for. I am thankful to live…
Dear Moms Dealing with Narcolepsy, Just because all the other moms do it, doesn’t mean you have to. Too often, moms feel like they have to be given permission. For…
Whether you’re trying not to gain weight over Thanksgiving, or the prospect of being around a bunch of food you can’t eat because it would be bad for your rare…
Okay, yes, so this study was published in 2011, but time is obsolete, am I right? Especially when it comes to information as important as this. Listen closely. Remember leprosy?…
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…
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