Have you ever felt woozy when you stood up? And maybe it was so bad you actually fainted. One possibility is you have a form of dysautonomia called postural orthostatic…
Welcome back to Editor's Choice! This week we have an interesting take on Parkinson's treatment. We also have an empowering article from one of PW's rare disease contributors. We are all feeling the…
After lobbying during Rare Disease Week on Capitol Hill a couple of weeks ago, I was convinced we were pretty successful with our congresspersons in showing them how vital NIH…
Irrelevant, insignificant, ignored, un-empowered, but worst of all INVISIBLE. Let me let you in on a big secret. Those of us who are fighting everyday with the simplest of tasks,…
We are back from Rare Disease Week in Washington, DC! And do we have some highlights for you below?! Rare Disease Day at NIH was not only informative, but encouraging.…
With the new administration, questions of coverage, the ACA and how it effects those of us affected by rare disease have been causing major concern. Today at the 2017 Legislative…
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).…
Recently, my boyfriend and I were looking at places to go on vacation before he gets deployed. He wants to travel internationally because this is his last chance for a…
Meet Emily Deaton, de 21 años, de Mechanicsville, Virginia. Al igual que muchas personas con enfermedades invisibles, el viaje de Emily a un diagnóstico preciso era más de una pesadilla…
Me encanta postres. Su "destacado" escrito al revés. Sólo hay algo para aliviar el de ser capaz de hundir sus dientes en algo dulce. Pero cuando se les diagnostica una…
Welcome back to Editor's Choice Patient Worthians! This week we have a story on some awesome rockers that are helping out the POTS community. We also have a sweet TEDx talk…
Postural orthostatic tachycardia syndrome does not exactly roll off the tongue, so most people refer to it as POTS. It's characterized by a sudden change of blood pressure that happens…
If we can accomplish big dreams, why wouldn’t we go after them? Just like Hannah Aspden of Raleigh, who was born without her left leg and lives with postural orthostatic…
Ser diagnosticado con una enfermedad neurológica crónica puede ser vindicación después de años de incontables visitas de especialistas, pruebas e investigaciones. Sin embargo, existe todavía un tipo de período de…
Ya know that “I’ve Fallen & I Can’t Get Up" joke? When you have postural tachycardia syndrome (POTS), jokes like that wear thin really, really, REALLY fast. What is POTS? Have…
It has been said that there is strength in numbers, and we are much stronger together! That’s probably why I connected with Shira Strongin, a young teen who lives with…
Hanna Gully era una niña con un sueño: que un día iba a viajar por el mundo, y se atreven a hacer todas las cosas que había establecido su mente…
So many workouts, so many excuses. Running? Cramps in your side. Swimming? Hate getting wet. Pilates? Expensive. Spin class? A headache. Walking? Um... Finally, an exercise truly devoid of downsides.…
Happy Almost-New-Year Patient Worthians! What is your new year resolution? As someone living with a chronic illness, mine is to get back to my cardiologist for that much-needed check-up I've…
Have you ever wanted to just take a break from addressing your illness? Like, taking those medical binders and folders and just keeping them in your car trunk for a…
I wrote the following poem when I was completely broken due to chronic pain. It is unfathomable to so many doctors that someone in so much pain can sit there…
What makes a complex subject like postural orthostatic, tachycardia syndrome (POTS) easy to understand? For me, good intentions are a large part of the equation. That’s one reason I had high…
She stands there with opened eyes Forgotten memories, stolen by time At first she speaks softly, Her words never heard. Then she yells FIRMLY Still not one head turned. She…
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