Happy Friday Patient Worthians! April is Sjogren's Awareness Month! There was also a whole day dedicated to Bohring-Opitz Syndrome. The MDS Foundation has another upcoming event as well. Lastly, last month…
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Everyone has problems. That’s part of life. In fact, we have that old phrase, “That’s life.” Usually, people whip out said phrase whenever something doesn’t go the way they want…
Royalty, murder, lots and lots of blood – sounds like elements from the plot of a Victorian-era thriller. Actually, this story comes straight from hemophilia history. Science Magazine published a…
Let's talk blood donation. I recently spoke with a man from a small African country who suffers from hemophilia. He told me that when he was growing up, there was no…
The key to solving ANY problem is knowledge. And so the same goes for raising awareness for those living with any type of illness. The more we know about the…
April 17, 2017 is World Hemophilia Day. This is significant not only for people with hemophilia, but also for those with other bleeding disorders like von Willebrand disease (vWD). If…
Eventually, we reach a place in life where making a meaningful impact in the world becomes a motivating force. We know we’re there when we simply want to make something…
You know what's awesome? Blogs. They're a great medium for people to: get out their thoughts in writing educate the public teach something about which they're passionate rant about politics…
Frustration. It winds you up and can take so much out of you. Not only does it suck energy, but it also distracts and can steal quite a bit of time.…
Shocker! Did you know it’s possible to acquire hemophilia? There’s a professor who I’m obsessed with from Texas—that would be “obsessed” as in a healthy obsession! And here’s why: He…
Happy Friday Patient Worthians! PW Contributor Nolan is back in our Video Series with his details on dystonia treatment. We also have some cool info on EDS gadgets! What do pharmaceutical companies mean…
Pharmaceutical marketing can often be a very big, very sharp double-edged sword. In order to make drugs and stay in business, pharmaceutical companies have to speak to their audience, which…
“Only the good die young.” “Live fast, die young, leave a good looking corpse.” “The idea is to die young as late as possible.” What do these three quotes have…
Wanna know one GOOD thing about having a chronic illness like hemophilia? It can help you get a scholarship that might just change your life! When you have a chronic…
If you're a woman experiencing a multitude of heavy bleeding days, you should do two things as soon as you can: Check out this website Talk to your doctor According to…
In the world of bleeding disorders, Factor VII deficiency could be considered the “runt of the litter.” And in the “dog eat dog world” of chasing research dollars, it’s a…
And now for something completely different… It gives me great pleasure to present my list of VIII (a.k.a. eight) things you have to wait for…and ONE very big one you…
We get it. There’s nothing cute about a medical ID bracelet. But if you’re someone living with a rare condition like hemophilia, it becomes less a fashion accessory, and more…
Shari Bender’s life didn’t exactly turn out the way she planned, but in reality, whose ever does? Bender’s daughter was born with hemophilia, a bleeding disorder that changed the lives…
Channel your inner Mickey and put those big ears to the ground! What’s that you hear? Why, it’s the sound of a whole lotta cutting-edge, exciting resources from the hemophilia community heading to…
I recently read an article about Hemophilia A and B from the Cleveland Clinic. I thought it was incredibly helpful because, sometimes, I get confused about the differences between the…
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