PW Contributor Angie just blogged about one of the most important messages us in the rare disease world need to hear: The Power of Positivity. Read more below: Positivity is hands…
Who doesn’t love a good story? A story that speaks to us. A story that spins a negative into a positive. When I listen to a person tell a story, I…
I recently read an article about a 22-year-old man from Utah who’d just returned from a missionary service in Brazil and was diagnosed with aplastic anemia. This is so sad…
September was dystonia awareness month [but that doesn't mean we can't keep promoting awareness]! Dystonia is a rare neurological movement disorder that can cause involuntary muscle spasms and contractions, tremors,…
Moving up the ranks in a disease state profile may be difficult, but not impossible. There are tried and tested ways to heighten awareness and get the dystonia message out…
Life is filled with endless opportunities. Sometimes the opportunities, or silver lining, are hard to see when we have problems with our health, finances, family, or career, but they exist.…
Have you ever wanted to push your own limits and break out of your comfort zone? If so, you’ll know that it is difficult because getting out of your routine…
I have been living with Cystic Fibrosis (CF) since birth. I was lucky that I was diagnosed early and started on medicine straight away. One in every 25 people carry the…
Have you lost a friend or family member? Do you wonder how you can memorialize or honor their life? This is the dilemma of Kate Shooshan, whose father died of familial…
In the immunodeficiency department, Cat Latuszek hit the unfortunate jackpot. After a lifetime of ear infections, she was finally diagnosed with Common Variable Immune Deficiency, or CVID, at the age…
I recently read an article about a little boy who’d been diagnosed with aplastic anemia, a mysterious and very serious illness that can strike adults as well as children. It’s…
I am beyond excited to report I have begun the process of recovery from late stage, chronic Lyme disease. A year ago, I was reading through articles, clicking on everything…
When you were a kid and planning your future, what events did you imagine? Your first car? Your prom? Your graduation? Your wedding? For this boy with Duchenne muscular dystrophy, he…
Shelly Mountain has traced her family history and shares how von Willebrand disease (VWD) has impacted six generations very differently since her great-great grandmother's era. Medical treatment was difficult back…
DaVita Garfield was a young mother with a great job, a strong faith, and was living a happy life when her health began to fail. She had a number of…
Playing games with your mind? That's exactly what experts believe you should do to stimulate your brain and stay sharp, no matter how old you are. You might be surprised…
Conozca a Brittany! Brittany estaba desanimado después de ir a un restaurante y tener la camarera ignoran por completo de ella cuando la distonía hace que le sea difícil…
People mostly know that cystic fibrosis (CF) causes issues with the lungs—to the point of breathing difficulty. Contrary to common assumptions, cystic fibrosis also affects the pancreas, making it difficult…
Sometimes a video speaks VOLUMES more than mere words. Maybe that’s why Kaleigh McCormick decided to make a video about her life with Ehlers-Danlos syndrome (EDS). Maybe she made the…
Celia Godfrey is awesome; there's just no debate about it. I wish I had her positive attitude. The seven-year-old lives with dystonia, a neurological condition that affects communication between the…
Call me crazy, but I’m pretty sure September was trying to kill me. The whirlwind romance with summer is over. All the front displays of the supercenters showcase the brilliantly…
When I was young, my grandfather delivered coal. And when I asked, “How much coal did you deliver today, Papa?” He always replied, “A shit ton!” That was Papa’s favorite unit of measurement.…
I want to see my kids grow up. I just want to see them a happy, that’s all. I think that goes with just about any parent; they just wanna…
I am THAT mom. I don’t like or take medicine unless it’s my last resort. And the same goes for giving it to my children. To a fault, I follow…
Scientists in Armenia are partnering with their scientific counterparts at the University of California in Los Angeles to map the genome of the Armenian people. This is an important step…
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