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Daily Archives: November 11, 2016

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Editor’s Choice: EDS Must-Know and Rare Disease Rants!

Editor’s Choice: EDS Must-Know and Rare Disease Rants!

  • Post author:Patient Worthy Contributor
  • Post published:November 11, 2016
  • Post category:Cystic Fibrosis/Ehlers-Danlos Syndrome/Rare Disease/Sjogren's Syndrome

Happy Post-USA Election Day Friends! TGIF Patient Worthians, am I right?! Hopefully this weekend is full of rest, relaxation and positivity! Maybe just avoid social media for a while and hang…

Continue Reading Editor’s Choice: EDS Must-Know and Rare Disease Rants!
Back to Basics: What You Need To Know About PAH
Source: pixabay.com

Back to Basics: What You Need To Know About PAH

  • Post author:PW Blogger
  • Post published:November 11, 2016
  • Post category:pulmonary arterial hypertension/Rare Disease

The human body is a magnificent creation. Everything works together as one big “machine.” However, from time to time for some unknown reasons we may develop a glitch that alters…

Continue Reading Back to Basics: What You Need To Know About PAH
Why You Need to Check Out This Sarcoidosis Foundation
Source: pixabay.com

Why You Need to Check Out This Sarcoidosis Foundation

  • Post author:PW Blogger
  • Post published:November 11, 2016
  • Post category:Rare Disease/Sarcoidosis

You couldn't breathe, you had swollen lymph nodes and a cough that would not go away. You go to the doctor and had some test done. You are told you have…

Continue Reading Why You Need to Check Out This Sarcoidosis Foundation
If You’re a Woman With HAE, This is Good News!
Source: www.pixabay.com

If You’re a Woman With HAE, This is Good News!

  • Post author:EmpatheticBadass
  • Post published:November 11, 2016
  • Post category:HAE/Rare Disease

I don’t know what it is about hereditary angioedema (HAE) that makes people with it have a really great sense of humor, but they do. Maybe it’s the absurdity of…

Continue Reading If You’re a Woman With HAE, This is Good News!
If Only There Were More Kids in the World Like This One
Source: pixabay.com

If Only There Were More Kids in the World Like This One

  • Post author:Lady Kehveen Abernathy
  • Post published:November 11, 2016
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

Any of you ever think about running a marathon? I know I have. I've thought about it. Have I run a marathon? NOPE! Sure haven't. That sh*t looks hard. Look,…

Continue Reading If Only There Were More Kids in the World Like This One
How to Balance Chronic Illness and School the Easy Way
Source: pixabay.com

How to Balance Chronic Illness and School the Easy Way

  • Post author:Sabina Kennedy
  • Post published:November 11, 2016
  • Post category:Cystic Fibrosis/Rare Disease

Parents and guardians of a child with chronic illness have it very hard, much harder than most people understand. Listening and reading your stories, I have come to understand that…

Continue Reading How to Balance Chronic Illness and School the Easy Way
This Man Has MSA and One Hell of a Good Attitude
Source: pexels.com

This Man Has MSA and One Hell of a Good Attitude

  • Post author:Erica Zahn
  • Post published:November 11, 2016
  • Post category:Multiple system atrophy (MSA)/Rare Disease

Multiple. System. Atrophy. Even if you know nothing about MSA, stringing those three words together doesn't sound promising. MSA is a neurodegenerative disorder that's characterized by autonomic nervous system failure.…

Continue Reading This Man Has MSA and One Hell of a Good Attitude
Mira lo que sucede cuando “Froggy” toma en serio la acromegalia
Pixabay

Mira lo que sucede cuando “Froggy” toma en serio la acromegalia

  • Post author:Patient Worthy Contributor
  • Post published:November 11, 2016
  • Post category:Acromegaly/Rare Disease

Ok, es el momento para un experimento. Coge un grupo aleatorio de gente de la calle y pegarlos en una habitación (asegúrese de preguntar en primer lugar, por favor). Pídales…

Continue Reading Mira lo que sucede cuando “Froggy” toma en serio la acromegalia
The Mentor She Wished She Had - How Elizabeth Became a Lifeline for EB
Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
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