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Dysautonomia

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On a Scale from One to Ten, a Poem

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…

Continue Reading On a Scale from One to Ten, a Poem
POTS: Please Explain in Words I Understand!
Source: www.pixabay.com

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…

Continue Reading POTS: Please Explain in Words I Understand!
Requiem for Me, A Poem

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…

Continue Reading Requiem for Me, A Poem
Editor’s Choice: Merry Christmas and Happy Hanukkah!

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…

Continue Reading Editor’s Choice: Merry Christmas and Happy Hanukkah!
Secret Ingredient Cranberry Sauce This Holiday Season

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,…

Continue Reading Secret Ingredient Cranberry Sauce This Holiday Season

La vida con disautonomia: Parte 2

  • Post author:Patient Worthy Contributor
  • Post published:December 18, 2016
  • Post category:Dysautonomia/POTS/Rare Disease

Para cualquier persona que todavía está dudando Disautonomía y POTS, yo he llegado con lo que llamo el Challenge Trick Disautonomía Parte. Por favor, ver mi video y probarlo por…

Continue Reading La vida con disautonomia: Parte 2
How to Find the POTS Information You Need

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…

Continue Reading How to Find the POTS Information You Need
Un vistazo a la vida POTSY de Mari

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…

Continue Reading Un vistazo a la vida POTSY de Mari
Conozcamos a esta poderosa mujer comenzando una conversacion sobre POTS
source: pixabay.com

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,…

Continue Reading Conozcamos a esta poderosa mujer comenzando una conversacion sobre POTS
La vida con dysautonomia – Part 1

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…

Continue Reading La vida con dysautonomia – Part 1
¿Por qué es esta mujer tan optimista en la cara de la EDS?

¿Por qué es esta mujer tan optimista en la cara de la EDS?

  • Post author:Patient Worthy Contributor
  • Post published:November 24, 2016
  • Post category:Dysautonomia/Ehlers-Danlos Syndrome/Rare Disease

Si las enfermedades raras estaban participando en un concurso de belleza, donde la "belleza" significa "poco conocido", "mal entendido", y "casi imposible de diagnosticar" -Ehlers-Danlos (EDS) sería a la altura…

Continue Reading ¿Por qué es esta mujer tan optimista en la cara de la EDS?
Fainting Is Not For The Faint Of Heart… Really.
Source: commons.wikipedia.org

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…

Continue Reading Fainting Is Not For The Faint Of Heart… Really.
How to “Eat Dance Laugh” for POTS
Source: pixabay.com

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…

Continue Reading How to “Eat Dance Laugh” for POTS
My “Anxiety Disorder” May Be Something Else Completely?
Source: www.pixabay.com

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.…

Continue Reading My “Anxiety Disorder” May Be Something Else Completely?
How to Party Hard for Dysautonomia Awareness
Source: pixabay.com

How to Party Hard for Dysautonomia Awareness

  • Post author:James Ernest Cassady
  • Post published:October 25, 2016
  • Post category:Dysautonomia/Rare Disease/Timely

Looking for a way to celebrate Dysautonomia Awareness month this year? Then you need to check out Dysautonomia International. Why? Because this incredible organization provides wonderful support to the dysautonomia community…

Continue Reading How to Party Hard for Dysautonomia Awareness
How Important is it for Your Doctor to Believe You?
Source: pixabay.com

How Important is it for Your Doctor to Believe You?

  • Post author:James Ernest Cassady
  • Post published:October 25, 2016
  • Post category:Dysautonomia/Rare Disease

In this article, Dr. Richard Fogoros examines the past and present of dysautonomia while also offering some hope for the future. Among his observations: the condition is far from new,…

Continue Reading How Important is it for Your Doctor to Believe You?
Why There’s No Good Time to Slow Down with POTS

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…

Continue Reading Why There’s No Good Time to Slow Down with POTS
Dysautonomia and Its Astonishing Effects
[Source: pixabay.com]

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…

Continue Reading Dysautonomia and Its Astonishing Effects
This Student with Dysautonomia is Out of the House!
[Source: pixabay.com]

This Student with Dysautonomia is Out of the House!

  • Post author:Patient Worthy Contributor
  • Post published:September 21, 2016
  • Post category:Dysautonomia/Timely

Imagine having a student in class that looks... a bit like this on a regular basis. You may have a lot of thoughts about what might be going on. The…

Continue Reading This Student with Dysautonomia is Out of the House!
A Wish Come True: Dysautonomia and EDS
[Source: pixabay.com]

A Wish Come True: Dysautonomia and EDS

  • Post author:Alisha Stone
  • Post published:September 8, 2016
  • Post category:Dysautonomia/POTS

The Sentinel-Record publication did a feature story in July 2016 on a young boy, Seth McDaniel, who lives with his family in Tennessee. Just 11 years old, Seth is living…

Continue Reading A Wish Come True: Dysautonomia and EDS
What Parents-to-Be Need to Know About Genetic Testing and Race
Source: www.pixabay.com

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…

Continue Reading What Parents-to-Be Need to Know About Genetic Testing and Race
The Day I Woke Up With POTS
Pixabay

The Day I Woke Up With POTS

  • Post author:Patient Worthy Contributor
  • Post published:August 9, 2016
  • Post category:Dysautonomia/POTS

When I was 14 or 15 years old, my father was deployed and the family was a little anxious say the least. That's why, when I woke up one spring…

Continue Reading The Day I Woke Up With POTS
What Every Spoonie’s Pantry Should Have
Pixabay

What Every Spoonie’s Pantry Should Have

  • Post author:Patient Worthy Contributor
  • Post published:August 8, 2016
  • Post category:Dysautonomia/Lyme Disease/POTS/Rare Disease

Because I have chronic inflammation due to Lyme disease and POTS, I'm constantly taking supplements and eating the right food to reduce that inflammation. Yes, that means I have to…

Continue Reading What Every Spoonie’s Pantry Should Have
Editor’s Choice: Acromegaly Options and Living Happy with Rare Disease

Editor’s Choice: Acromegaly Options and Living Happy with Rare Disease

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

Welcome to this week's Editor's Choice! Those with acromegaly have a few options for treatment. Pituitary surgery and clinical trials for new drugs are two of these acromegaly treatment options,…

Continue Reading Editor’s Choice: Acromegaly Options and Living Happy with Rare Disease
Mom With Sjogren’s and Lupus Will Make Your Heart Hurt

Mom With Sjogren’s and Lupus Will Make Your Heart Hurt

  • Post author:PW Blogger
  • Post published:July 25, 2016
  • Post category:Dysautonomia/Rare Disease/Sjogren's Syndrome

Nicole Tardiff-Brooks just wants to be a mom to Colin, her sweet 4-year-old son. But Nicole has several diseases--lupus,  Sjogren's disease, and severe neurological and liver damage. Colin knows Mommy is sick,…

Continue Reading Mom With Sjogren’s and Lupus Will Make Your Heart Hurt
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