By Any Other Name Would Your Rare Disease Still Suck?
Never judge a book by it's cover, or a disease by it's name. Familial Mediterranean fever is not a chronic longing or fiery passion for the beaches along the coast of…
Never judge a book by it's cover, or a disease by it's name. Familial Mediterranean fever is not a chronic longing or fiery passion for the beaches along the coast of…
Raising Awareness...Activism...Advocacy... Those are just some of the words we use to demand action from anyone whether it be world leaders, industries, friends or family. Every day we engage in…
Chronic Lyme is as the name indicates...chronic. But it definitely was at it's worst during tough antibiotic treatment. I was recently talking to my girlfriend who is currently going through…
Happy Tuesday, Caregivers! I say this in all sincerity because as caregivers—it’s easy to find yourself actually dreading the weekends, right? You know what I’m talking about. You know that…
Wheelchair pillow: $300 Monthly prescription costs: $400 The cost of having multiple autoimmune disorders? Exorbitant (and growing). On websites like PatientWorthy, we talk a lot about the physical tolls rare…
I have early onset cervical dystonia. CD is a neurological condition that causes the muscles in my neck and shoulders to spasm involuntarily. For some people, it gets progressively worse…
"Paralysis" "Convulsions" "Bizarre" "Frightening" "Anxiety" "Depression" These are just a few of the words you'll find on this narcolepsy infographic, posted by Tumblr user needlenightnemesis. If you don't live with…
When my cat isn't distracting me with his exotic dance routine (he's just trying to get through catnip tasting school okay!? don't judge!) I do research on subjects that help…
If you could alter your child's genes to ensure they wouldn't inherit a rare, chronic disease, would you? That's the ethical question swirling around scientific circles these days, and it's prompted…
I have been off of long-term antibiotic treatment for Lyme disease now for 6 months. How FREEING! During treatment I had so many chemicals running around my body. I had…
Part 2- A Patients’ Perspective on Healthcare in America-The Ridiculous: That Time When a Revolutionary Act got Lost in the Senate. In July of 2015, the House of Representatives passed…
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…
Parents who have children with rare diseases know the struggle of seemingly innocent questions and conversations. "How is your child doing?" "Why can't your child play today?" "How strange! He/she was…
Son of a biscuit! I'm a little upset and I'll tell you why, but first I have a confession to make: I don't actually live with any of the conditions…
Justin Caba sat and watched a basketball game. His mind however, was far from the friendly competition. Watching his favorite players, all far taller than average, made him wonder about…
Let's face it, it's not a secret that phones and tablets are taking over our lives! Even the littlest among us are showing a shocking attachment to the glowing screens.…
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…
You want to know what the most popular position in bed is? Scroll down below to check out Lisa's most recent blog post to find out. For all of our…
This year’s holiday season was difficult. Allow me to explain by saying that it was great to be with my family after at least 20 years of not being in…
The Corr family has had a tough year. Tough, sure, but equally as joyous. They’ve been adjusting to life with their year oldest daughter Harriet. Soon after Harriet was born came…
Ever been put off by a headline, but felt compelled to read the post? Yup. That was me when I happened upon the article, A Day in the Life of…
Let’s face it. Every now and then, you run across an article that makes ya wanna go, “Whaaaa?” And this is the perfect example. Apparently, a bunch of research analysts…
Time is running out! Join us before September ends to make the ninth month of the calendar Dystonia Awareness Month. If you haven't already..... #signtheDAMpetition Guest Blogger: Pamela Sloate provides…