Facebook-f Twitter Instagram Podcast Youtube Tiktok Linkedin-in Pinterest Envelope Share
SHARE YOUR STORY!
  • About
    • Meet Our Contributors
    • Meet Our Partners
    • Meet the Patient Worthy Team
    • Collaborative Content On Patient Worthy
  • Diseases
  • Share Your Story
    • Patient Worthy Content Submission Guidelines
    • Patient Worthy Writing Prompts
    • Submit Your Story
    • Patient Stories
  • Resources
    • Library
    • Events
    • Patient Worthy FAQs
  • Podcast
  • Contact
Menu
  • About
    • Meet Our Contributors
    • Meet Our Partners
    • Meet the Patient Worthy Team
    • Collaborative Content On Patient Worthy
  • Diseases
  • Share Your Story
    • Patient Worthy Content Submission Guidelines
    • Patient Worthy Writing Prompts
    • Submit Your Story
    • Patient Stories
  • Resources
    • Library
    • Events
    • Patient Worthy FAQs
  • Podcast
  • Contact
  • Join PW

Daily Archives: November 30, 2016

  1. Home>
  2. 2016>
  3. November>
  4. 30
Where Ya Been Hiding Out for the Last 21 Years?
Source: www.pixabay.com

Where Ya Been Hiding Out for the Last 21 Years?

  • Post author:Erica Zahn
  • Post published:November 30, 2016
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

Years ago, there was a television show called Tales from the Crypt. From what I remember, a creepy-looking hand would open a creaky-sounding door and the viewer would "enter" the…

Continue Reading Where Ya Been Hiding Out for the Last 21 Years?
Living with Tourette’s is No Laughing Matter
Source: www.pixabay.com

Living with Tourette’s is No Laughing Matter

  • Post author:Ronald Ledsen
  • Post published:November 30, 2016
  • Post category:Rare Disease/Tourette syndrome

Few conditions are as widely misunderstood as Tourette Syndrome, and sadly, even fewer are so readily targeted for cheap laughs and rude humor. The reality of living with Tourette’s is…

Continue Reading Living with Tourette’s is No Laughing Matter
Could Ketamine Be the Answer to Your CRPS Pain?
Source: Pixabay.com

Could Ketamine Be the Answer to Your CRPS Pain?

  • Post author:Farrah Fontaine
  • Post published:November 30, 2016
  • Post category:Complex Regional Pain Syndrome/Rare Disease/Timely

When you have a rare disease like complex regional pain syndrome (CRPS), sometimes it seems like doctors don't know anything about it. What's worse, it seems like a lot of…

Continue Reading Could Ketamine Be the Answer to Your CRPS Pain?
Meme: Just Keep Swimming

Meme: Just Keep Swimming

  • Post author:Rebekah
  • Post published:November 30, 2016
  • Post category:Rare Disease

It's not an easy swim but moving forward is important. You could be so close to having luck be in your favor.

Continue Reading Meme: Just Keep Swimming
NMO Peeps! You Need to Know This!
Source: pexels.com

NMO Peeps! You Need to Know This!

  • Post author:EmpatheticBadass
  • Post published:November 30, 2016
  • Post category:Devic's Syndrome (Neuromyelitis Optica)/Rare Disease

“In the pipeline” means something pretty special for people living with rare diseases that have no cure, such as neuromyelitis optica (NMO or Devic disease). Far from the divisive protests…

Continue Reading NMO Peeps! You Need to Know This!
Excuse Me, But are You Missing the Arginase Enzyme?
Source: pixabay.com

Excuse Me, But are You Missing the Arginase Enzyme?

  • Post author:Erica Zahn
  • Post published:November 30, 2016
  • Post category:Arginase deficiency/Rare Disease

Arginase is an enzyme that helps break down nitrogen, a waste product of the body's protein metabolism. Nitrogen is converted into urea and then excreted from the body through urine.…

Continue Reading Excuse Me, But are You Missing the Arginase Enzyme?
Tourette Syndrome: 10 Facts that Will Make You Smart
[Source: Pixabay.com]

Tourette Syndrome: 10 Facts that Will Make You Smart

  • Post author:Alisha Stone
  • Post published:November 30, 2016
  • Post category:Tourette syndrome

Santa's not the only person making Naughty or Nice lists--and here's how to stay off of at least one of 'em! I gotta admit, I’m new to the Tourette syndrome…

Continue Reading Tourette Syndrome: 10 Facts that Will Make You Smart
5 cosas a evitar cuando estas frente a un perro de servicios especiales
Source: www.pixabay.com

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…

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

Featured


Picture of Family


Metastatic Breast Cancer: Navigating Grief


Picture of Ralph Family walking


Rethinking What It Means to Live With Acromegaly


Illustration of mentor program members


The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

SHARE YOUR STORY!
We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

Let’s Work Together!

Partner With Us
Submit a Story

Keep Up to Date

Subscribe to Our Newsletter
Check Out Rare Events
Get Inspired By Our Memes

Learn More

About Us
Rare Diseases and Conditions
Terms of Use
Privacy Notice
Privacy Policy for CA Residents
EU/UK Privacy Notice
Data Privacy Framework: Consumer Privacy Policy
Consumer Health Data Privacy Policy
Cookie Notice

Facebook-f Twitter Instagram Podcast Youtube Tiktok Linkedin-in Pinterest Envelope

© Copyright 2024 Patient Worthy

Sign Up With a Patient Worthy Account and Share Your Rare Story

- OR -

Sign Up For Our Patient Panel

Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.

More Info

We're Happy You're Here!

What best describes you when it comes to rare disease? (check all that apply)

What rare disease(s)/conditions are most important to you?

Visit Home Page or

Thank you for signing up for a Patient Worthy Account!

Have a rare disease story to share? Let us know

Share Story

- OR -

Sign Up For Our Patient Panel

Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.

More Info