Life with myasthenia gravis has taken some dramatic turns and created both challenges and opportunities. One of those dramatic moments was having to decide in my early 20s whether I ... Read more

Receiving a diagnosis for a rare disease takes an average of 4.8 years, according to one study. That means almost five years of daily struggles with an unknown cause. It ... Read more

Rare Disease Day on Feb. 29 is an important advocacy effort for every one of us fighting a rare disease, every minute of every day. It is a day for ... Read more

I had chemotherapy about 10 days ago and returned to work later that day to ensure that I was on top of things before a weekend of recovery. My body ... Read more

Last week, I visited my doctor because I could feel my health slip-sliding down a waterslide and didn’t want to end up back in the intensive care unit. When I ... Read more

A memory popped up on my Facebook page recently that left me speechless. I think that sometimes we are so busy simply placing one foot in front of the other ... Read more

A rare disease diagnosis takes you on a different path than that of your friends and family. It means you have to count your spoons, plan your life, and work ... Read more