It’s a scene no one anticipates. The doctor walks into the room where you, and maybe a loved one, are sitting. Clipboard in hand, the doctor pulls up a chair,…
Nikeh Gray has sickle cell anemia and has been in and out of the hospitals for years. Not only is she constantly managing her disease, as the Guardian reports, but…
A year ago, a WUSA9 News reporter named Nikki Burdine of Dumfries, Virginia shared her personal story with the world. She revealed that she has Tourette’s syndrome. In her news…
Being diagnosed with pulmonary hypertension (PH) may feel like life is being turned upside down. One woman is sharing her story to allow others a glimpse into what it's really…
If you lost a child to a rare disease and knew there was a 1 in 4 chance that it could happen again, would you try for more children? That…
People who take initiative figure out how to do things on their own. And that’s exactly the case for Reva Dolobowsky and her current volunteer role as the warm welcoming…
Lately, I've been learning a lot about mucopolysaccharidoses (MPS). MPS covers a lot of territory. It refers to when the body is missing a particular enzyme--it doesn't matter which one:…
It’s probably symptomatic of our celebrity culture that many people tend to associate diseases not with symptoms, but with famous people. For example: Multiple Sclerosis is what Richard Pryor and…
It’s hard to imagine what it would be like to hear that there is something wrong with your unborn baby. For those of us who have never heard this, it…
In my humble opinion, running sucks. But running for a cause? That’s something I can get behind. Londoner Wayne Russell, donned his sneakers and ran the entire perimeter of mainland…
As humanity collectively slinks into the cold, dark days of winter, we could all use something to warm us up… or at least bring a small slice of sunshine. Well,…
It’s very possible that you have found yourself in a situation where you would have liked to improve somebody's mood, but you may not have known how to do it.…
Have you ever heard the expression— “In for a dime, in for a dollar”? It basically means if a person commits to something, then he/she commits all the way. And…
Kathryn es una esposa y madre de dos niños increíbles. Ella vive con síndrome de fiebre periódica idiopática indiferenciada, urticaria inducida por el frío y síndrome de taquicardia postural (POTS).…
His gums were bleeding. Can you imagine? Think about it—waking up one morning and your gums... are bleeding. I don't know about you, but I'd freak out. This stuff doesn't…
It sounds like a cliché to say that “becoming a parent changes everything.” Probably because it is a cliché. But as a parent, I know it also happens to be…
Every week, my son’s principal sends a voicemail to parents highlighting the week’s news and activities. At the end of the message, she signs off with a reminder to “Be…
Imagine walking through the woods at night. You have no lantern and no flashlight—not even a match. The darkness is suffocating, and you’re terrified. But you keep blindly stumbling. It’s…
Now that the brutal and bruising 2016 Presidential Election is behind us and we’ve waded into the Trump era, maybe we can finally move past some of the most divisive…
We’ve all walked passed a seeing eye dog on duty. The ability of the dogs (and trainers) to learn and react to so much in a safe way is utterly…
Ohhh, I've got a spark for discussion. I’m verklempt after reading a post from a 30-something woman who is living with idiopathic pulmonary fibrosis (IPF). First, it breaks my heart…
In a previous life, I worked with a number of people living with Parkinson’s disease (PD) to help advocate for them and empower them to fight back to make the…
A frequent problem with for rare disease patients worldwide is being correctly diagnosed. Prior to the diagnosis you won't know the proper treatments, you don't know why you're experiencing your…
I love my husband. He is my best friend. When we stood before God and our family to exchange vows, we made a commitment for better or for worse. Wow,…
The first time I encountered him, I stared at him, mouth agape with genuine shock on my face. He could not fail to notice my expression. Thankfully, he didn’t take…
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