Anyone with rare and neurological disease can relate: there aren't a ton of treatment options and there are almost never any cures for our conditions. We often times just have to treat…
Part 2: Intrahepatic Cholestasis of Pregnancy Click here if you missed Part 1. Before I went through all of this I had the very innocent idea that doctors knew what…
It's said that Nero fiddled while Rome burned--by comparison to a musician in China's activities during brain surgery, Nero had it easy. Imagine jamming out on your guitar while surgeons operate…
The Webster dictionary defines motivation as, "a force or influence that causes someone to do something." So that leads us to ask... What's the force that causes you to take…
Okay, call me crazy. Call me SNARKY, but this is ridiculous! Here’s another perfect example of: Not having all of the facts! OR Stupidity that almost gets an innocent young…
2016 has started out pretty rough. Beginning at around noon on January 1st, I had to deal with a very painful pocket of infection just to the left of my…
Part 1: A Terrible Itch—and Unspeakable Loss Everyone knows that I am an autoimmune mess due to an invisible chronic illness comprised of multiple autoimmune diseases. Here is a part of…
Pulmonary Hypertension is a rare and debilitating condition that can prove fatal in as little as three years unless specialized treatment is given. The Pulmonary Hypertension Association has developed an accreditation process…
Soy Charlie, un joven de 27 años de edad, trabajando en marketing digital en Auckland, Nueva Zelanda. Soy un gran fan de un buen café, buena cerveza, buen vino, buena…
Happy First Week of February! Do you have a rare disease and find art as an outlet for you? Are you always fighting to find more ways to treat your…
My mom is a big believer in trying things. She never wanted her kids sitting still, so when we weren’t being unceremoniously pushed outside to hang out with neighbors, we were…
Recently I have been fortunate enough to be tested for remission from chronic Lyme disease. For those of you who haven't heard of the latest Lyme Antigen Test, it uses Nanotrap®…
I read an article about pregnancy screening for disabilities recently. In it, there was one quote from a mom who has Ehlers-Danlos syndrome (EDS), an inherited condition which affects connective tissue and causes…
Conozca a Samanta. Ella ha estado luchando contra una increíble cantidad de síntomas desde principios de 2012. Ella está actualmente diagnosticada con la enfermedad celíaca, colitis ulcerosa, gastritis, neuropatía autonómica,…
Natasha Lipman, a chronic illness blogger, was watching TV one morning, when something rankled her ire. The ITV show, This Morning, was doing a segment on whether or not children…
Simply put, Adam Jacobs’ photos are breathtaking. And it’s quite possible that he never would’ve discovered his talent if he hadn’t picked up a camera as a way to distract…
As any parent of a child with cystinosis will tell you, life with the disease can be like a roller coaster. Some days are filled with highs; others with lows.…
I feel so inspired by Canadian doctors and their healthcare system! I recently read an interesting post from Julie; she and her husband live in Canada and are the proud…
Mi nombre es Benjamin. Soy el padre orgulloso de un sabueso que me encanta tomar en caminatas. Soy un jugador y una cabeza armario metálico. Estoy 6'2 "y pesa 215…
Patient Worthy recently asked the President of the Acromegaly Association Jill Cisco, what it felt like to have acromegaly. Below is her response. Acromegaly is a disease that affects a person…
You spent years taking piano lessons, spent thousands of hours practicing, and were enjoying your professional career with an orchestra. Then IT happened. Every time you sit down on the piano bench, your…
Personally, I'm a cat person, but I've never had any doubt that Dog is Man's best friend. And this story has pretty much solidified that concept for me. Sam Sutcliffe…
On a Friday night, Torrie Kruse's world went black. The teenager can't recall being rushed to the hospital. She can't recall doctors scrambling around her hospital bed, trying to make sense of the problem. She…
Conoce a Hannah, no puede no darse cuenta de todo lo que ella lucha con mirarla. Ella tiene doce años de edad. Esta es #InvisibleFight de Hannah Con Osteodistrofia hereditaria…
When Jon Miller, president and founder of the Network of Tyrosinemia Advocates (NOTA), learned of a family in Puerto Rico who had moved to Connecticut to get treatment for their…
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