I love the holidays. The lights, decorations, family time... even the smells are better! People generally seem to be jollier, even though there are a few obvious stresses that come…
When my family friend's new girlfriend came to meet us, she made the best impression with her positive attitude and general ease in interacting with a large (and probably overwhelming)…
I saw a quote, recently, that resonated with me. It said: "I fight for my health every day, in ways most people don't understand. I'm not lazy. I'M A WARRIOR." Dealing…
Do you live with Complex Regional Pain Syndrome (CRPS)? Are you looking for inspiration from someone with experiences like yours? Well… Katelyn (Katie) O’Leary, a 27-year old Indiana native living…
Not many diseases affect the nervous system like Parkinson Disease. Millions of people had no idea what Parkinson Disease was, or how life-changing it could be, until one of America’s…
5 Tips to Maintain a Healthy, Active Lifestyle While Living With Von Willebrand Disease Von Willebrand disease (vWD) is a rare bleeding disorder, found in about 1 percent of the…
How do I know if I have Lyme disease? The Center for Disease Control has a helpful infographic showing the most common symptoms from 2001 to 2010. In order from most…
Myasthenia Gravis is a neuro-muscular autoimmune disease that can make the body go weak at any time. If you have Myasthenia or MG like me, you know that some days…
1. It’s Genetic A hereditary condition, familial hypercholesterolemia (FH) affects roughly 1 in 500 people around the world, according to the National Institutes of Health. Because the disorder is present…
Sometimes, focusing on creating something positive out of your rare disease/chronic illness experiences can help you move forward. Here are 3 ideas for you to think about or try: 1.…
Do you have narcolepsy? Have you ever heard any of the following? “You should get a little more rest; then you’ll be fresh and ready to go.” “Exercise and eating healthy…
Epilepsy and Narcolepsy are related False. Epilepsy and Narcolepsy are NOT related. Sometimes, narcolepsy can be misdignosed as epilepsy. A narcoleptic experiencing symptoms of cataplexy can be mistaken for a seizure. But it…
Gaucher disease has come a long way, but that doesn't meant it's easy to understand when you're first diagnosed. Luckily, these facts can get you started: Fact One: Gaucher disease affects…
Part 1- A Patients’ Perspective on Healthcare in America-The Good and the Bad Patient State of Union Lisa D recently spent the week in Washington, DC listening to some staggering statistics…
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