You know the old adage that if you give someone an inch, they’ll take a mile? While it is highly unlikely that whoever this “someone” is will take 63,360 times…
Want some more news, events and announcements on Dravet syndrome? We got 'em! [one_half] [/one_half] [one_half_last] Opko Health Inc. is Closing In on a Treatment for Dravet Syndrome…
For anyone out there who has climbed a mountain, you know one of the universal truths of all monumental tasks: A mountain always looks bigger when you’re standing at the…
As much as it pains me as a “word guy" to admit it, music is probably unparalleled among all the other arts in its ability to motivate action and change…
Welcome to Friday Patient Worthians! This week we have a PW Contribution on one woman's battle with Stiff Person's Syndrome. We also have a piece on using fear to serve you in…
Who would have thought that a classic novel came about because a student accidentally skipped a page in his test booklet for a final exam essay? The person charged with…
The below article was originally published on May 31st, 2017 on the International Pemphigus and Pemphigoid Foundation website, and is being republished here with permission. It wasn’t easy getting to…
What’s the biggest nightmare of any parent? Is it the fear of a kidnapper? Is it some horrible, lifelong medical condition that needs constant medicine or repeated hospitalization? Is it…
One of my biggest struggles used to be living without a diagnosis and trying to figure out what to say to people. What was I supposed to say when I…
In India, one in 40 people carry the gene for Spinal Muscular Atrophy. If both parents carry the gene, then there is a 25 percent chance that the child may…
Be on the lookout for this amazing sickle cell anemia blog! Caregivers, friends, family, and patients of sickle cell, there is a new blog committed to raising awareness about sickle…
Malik, 21, has been living with sickle cell anemia since he was born. Sickle cell anemia is a disease in which the body makes red blood cells in an abnormal…
We all have those memories of Christmas time when we wanted that one toy so badly. We would have gladly given an arm or a finger to get that gaming…
Okay, I’m going to be perfectly honest: I don’t quite know what to make of this. On the one hand, you have some excellent news for people living with mucopolysaccharidosis…
It’s so easy to nitpick and find things wrong with organizations. It’s much harder to see what it is they're doing that's good. One particularly fun punching bag is the United…
Spinal muscular atrophy (SMA) is caused by the loss of motor neurons in the spinal cord and the brainstem. It leads to weakness and muscle wasting that affects a baby's ability…
One of the hardest parts of living with a rare or chronic condition such as hereditary angioedema (HAE) is being told “but you don’t look sick!”—even when you feel like…
Our children bring us so much laughter and joy. Spending lots of quality time with our kids is proven to be good therapy; they benefit from wholesome interaction with their…
Behcet's disease falls under the umbrella of autoimmune diseases and disorders. It affects approximately 400 of 100,000 people in Turkey, and is also commonly found in the Middle East. It…
Did you ever get that weird feeling when you've arrived at the party, but almost all the guests have already departed? Yes, you are definitely late, late, late. That's how I feel…
Have you ever heard of the children’s book, Harold and the Purple Crayon? It’s about a little boy who draws the things he wants to see with his purple crayon,…
Leathia Boyd is a 38-year-old woman, mother, and wife living with sickle cell anemia. She's also an advocate and has been one for more than six years. It all started when she joined…
Recently diagnosed with a rare disease and don’t know where to turn for more information? Have a loved one with a rare disease and struggling to understand the science behind…
I like to say that my brother has an addictive personality. I introduced him to George R. R. Martin’s A Song of Ice and Fire series, and he read the four…
Imagine this: two elementary students are in the restroom at school, smoking a bowl. And then, the principal walks in. Rather than flying off the handle, the principal smiles and…
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