5 Ways to Do Cardio with POTS

• Post author:Patient Worthy Contributor
• Post published:January 12, 2017
• Post category:Rare Disease

Having dysautonomia is not just a challenge during the day at work, but also when it comes to exercising... which is of course a necessity when trying to manage POTS…

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Dysautonomia Chick Storming Capitol Hill is the Best News Ever

• Post author:Sabina Kennedy
• Post published:January 11, 2017
• Post category:Complex Regional Pain Syndrome/Dysautonomia/Ehlers-Danlos Syndrome/POTS/Rare Disease

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…

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Si 3 millones de estadounidenses tienen POTS, ¿por qué es tan mal entendido?

• Post author:Patient Worthy Contributor
• Post published:January 9, 2017
• Post category:Dysautonomia/POTS/Rare Disease

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…

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When Walking Events Boost Amazing Support

• Post author:Sabina Kennedy
• Post published:January 3, 2017
• Post category:Ankylosing Spondylitis/Duchenne Muscular Dystrophy/Dysautonomia/HAE/Huntington's disease/POTS/Primary Immunodeficiencies/Rare Disease

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.…

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Editor’s Choice: What is Your Resolution This New Year?

• Post author:Patient Worthy Contributor
• Post published:December 30, 2016
• Post category:Dysautonomia/Dystonia/Lyme Disease/Myasthenia Gravis/POTS/Rare Disease

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…

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My Chronic Illness New Year’s Resolution

• Post author:Patient Worthy Contributor
• Post published:December 30, 2016
• Post category:Dysautonomia/POTS

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…

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On a Scale from One to Ten, a Poem

• Post author:Patient Worthy Contributor
• Post published:December 29, 2016
• Post category:Dysautonomia/POTS/Rare Disease

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…

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POTS: Please Explain in Words I Understand!

• Post author:EmpatheticBadass
• Post published:December 26, 2016
• Post category:Dysautonomia/POTS/Rare Disease

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…

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Requiem for Me, A Poem

• Post author:Patient Worthy Contributor
• Post published:December 26, 2016
• Post category:Dysautonomia/POTS/Rare Disease

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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Editor’s Choice: Merry Christmas and Happy Hanukkah!

• Post author:Patient Worthy Contributor
• Post published:December 23, 2016
• Post category:Cystic Fibrosis/Dysautonomia/Dystonia/Myasthenia Gravis/POTS/Rare Disease

Happy Christmas/Hanukkah/Holiday break Patient Worthians! This week, we are highlighting our amazing contributors for all of their heartfelt and honest stories. One post is about how to stay out of…

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Secret Ingredient Cranberry Sauce This Holiday Season

• Post author:Patient Worthy Contributor
• Post published:December 20, 2016
• Post category:Dysautonomia/POTS/Rare Disease

If you’re like me with a chronic illness, then you have to watch what you eat! Especially around the holidays. I LOVE cranberry sauce but whenever someone else makes it,…

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Doctores, enfermeras, y el ser un paciente

• Post author:Patient Worthy Contributor
• Post published:December 19, 2016
• Post category:CAPS/FCAS/POTS/Rare Disease

'' Mover a la costa oeste ha sido tan divertido; Tenía mi pueblo, mi equipo de vuelta al este. Tuvimos una clara mano corta y tengo la suerte de que…

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How to Find the POTS Information You Need

• Post author:EmpatheticBadass
• Post published:December 15, 2016
• Post category:Dysautonomia/POTS

When it comes to evaluating websites to help you cope with how postural orthostatic tachycardia syndrome (POTS) affects your life, what’s your approach? Here’s what I look for (in order of…

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Un vistazo a la vida POTSY de Mari

• Post author:Patient Worthy Contributor
• Post published:December 12, 2016
• Post category:Dysautonomia/POTS

¿Se ha sentido perdido en su propio cuerpo alguna vez? ¿Alguna vez ha perdido temporalmente su audiencia debido a la masiva sonando en los oídos? ¿Usted ha tenido el mundo…

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How Support Helps You Stay Popular in the POTS World

• Post author:Sabina Kennedy
• Post published:December 7, 2016
• Post category:POTS/Rare Disease

We all need to be able to turn to family and friends when we've got a problem. There is a strong link between the support we receive and our well-being. It…

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Conozcamos a esta poderosa mujer comenzando una conversacion sobre POTS

• Post author:Patient Worthy Contributor
• Post published:December 5, 2016
• Post category:Dysautonomia/POTS/Rare Disease

Oye, ¿te gustaría ser capaz de usar pantalones cortos en cualquier momento que desee, incluso en pleno invierno? Suena bien, ¿verdad? ¿Qué hay de poder comer tanta sal como desee,…

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5 cosas a evitar cuando estas frente a un perro de servicios especiales

• Post author:Patient Worthy Contributor
• Post published:November 30, 2016
• Post category:POTS/Rare Disease

Está bien, todos ustedes, amantes del perro, escuchen! Love 'em todo el ya desea ducha de su propio perro, el perro de su vecino, un perro al azar en el…

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La vida con dysautonomia – Part 1

• Post author:Patient Worthy Contributor
• Post published:November 28, 2016
• Post category:Adenosine Deaminase Deficiency /Dysautonomia/POTS/Rare Disease

Puedo parecer "bien" para que en el exterior, pero lo que estoy experimentando en el interior no es "fina". Tengo un par de diferentes formas de una enfermedad incurable llamada…

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Fainting Is Not For The Faint Of Heart… Really.

• Post author:Erica Zahn
• Post published:November 3, 2016
• Post category:Dysautonomia

Have you ever fainted? I have. Three times and all were related to receiving shocking news. The first time was when my grandmother unexpectedly passed away. The second time was…

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How to “Eat Dance Laugh” for POTS

• Post author:Sabina Kennedy
• Post published:October 27, 2016
• Post category:Dysautonomia/POTS

When I became a parent, I wasn’t acutely aware of what I was signing up for. In the beginning, my role was highly predictable and, in my mind, the newborn stage…

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My “Anxiety Disorder” May Be Something Else Completely?

• Post author:PW Blogger
• Post published:October 26, 2016
• Post category:Dysautonomia/POTS/Rare Disease

One day you go from being an active person full of life to waking up not feeling like yourself. You get a bad cold. You never seem to bounce back.…

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Why You Need to Exercise Even When You’re Fatigued

• Post author:Farrah Fontaine
• Post published:October 13, 2016
• Post category:POTS/Sjogren's Syndrome

When you have an autoimmune disease like Sjogren's and you've heard your doctor tell you for the umpteenth time that you really need to exercise, you kinda just want to…

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Why There’s No Good Time to Slow Down with POTS

• Post author:PW Blogger
• Post published:September 23, 2016
• Post category:Dysautonomia/POTS/Rare Disease

Lifestyle adjustments. You know your life will change once you get a disease diagnosis. These changes may be easy or hard depending on how you are currently living life. For…

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Dysautonomia and Its Astonishing Effects

• Post author:Erica Zahn
• Post published:September 22, 2016
• Post category:Dysautonomia/Rare Disease

Dysautonomia is an umbrella term for a number of disorders of the autonomic nervous system (ANS). But to understand the collection of conditions called "dysautonomia," first we have to understand…

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What Parents-to-Be Need to Know About Genetic Testing and Race

• Post author:Kiki Jones
• Post published:August 22, 2016
• Post category:Dysautonomia/Gaucher Disease/POTS/Rare Disease

Race and ethnicity is a touchy subject—and rightfully so—but that doesn’t mean it shouldn’t be discussed, especially in terms of healthcare. The fact is, certain genetic diseases pop up in…

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