Lately, I haven’t been particularly mindful of hope. In truth, sometimes I feel like it’s more suited to children’s fairy tales. But the more I’ve turned the issue around in…
Growing up in the New York City area, the fear of ticks was drummed into me. The tiny little buggers could hitchhike home with us tucked in the waistband of…
Una de las partes frustrantes de tener la enfermedad de Behçet es que puede afectar a muchas partes diferentes del cuerpo. Y a diferencia de otras condiciones que sólo pueden…
If you have Ehlers-Danlos Syndrome (EDS), life can get a bit complicated. Between doctors not knowing what you have to trying to figure out what treatments to use, it can…
If you had the opportunity to gaze into a crystal ball and see the future, would you do it? And if you did, and you noticed something amiss, would you…
When you have a rare disease like ankylosing spondylitis (AS), one of the most annoying things your doctor can say to you is: "Well, you need to exercise more." Why…
Oye, ¿te gustaría ser capaz de usar pantalones cortos en cualquier momento que desee, incluso en pleno invierno? Suena bien, ¿verdad? ¿Qué hay de poder comer tanta sal como desee,…
Sometimes it feels like nothing is going your way. Though it can be difficult, try to find the positive. Silver linings can make a world of difference.
Multiple system atrophy (MSA), formerly known as Shy-Drager Syndrome, while rare, presents many different challenges, the first of which is finding a doctor who recognizes the symptoms. This can be…
Isn't it it ironic that the rarest things in the world can also be the most severe? Acromegaly, for example. When she was only 23, Jillian was diagnosed with a…
Dear Exhausted Mom Living with Primary Immunodeficiency Disease (PI), I know how you feel. You are tired. Our worlds may feel and look similar, but I’m not living with primary…
I once heard that the difference between a good performance and a stellar one is transcendence—going beyond what’s written in the script or a song sheet. And, in my personal…
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…
Years ago, there was a television show called Tales from the Crypt. From what I remember, a creepy-looking hand would open a creaky-sounding door and the viewer would "enter" the…
Arginase is an enzyme that helps break down nitrogen, a waste product of the body's protein metabolism. Nitrogen is converted into urea and then excreted from the body through urine.…
Está bien, todos ustedes, amantes del perro, escuchen! Love 'em todo el ya desea ducha de su propio perro, el perro de su vecino, un perro al azar en el…
Carcinoid syndrome occurs when a carcinoid tumor secretes certain chemicals into the blood stream. While rare, most of these tumors are contained in the gastrointestinal tract. Symptoms include, but aren't…
Okay, I’m just baffled. Baffled. I’m trying to process my feelings as I’m writing this article because, well, that’s what women have to do sometimes. So, I just posted two…
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…
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