Facebook-f Twitter Instagram Podcast Youtube Tiktok Linkedin-in Pinterest Envelope Share
MASH Rec CARD (13)
CLICK HERE TO 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: May 18, 2016

  1. Home>
  2. 2016>
  3. May>
  4. 18
His New Nickname is “Death to Pitched Things”

His New Nickname is “Death to Pitched Things”

  • Post author:PW Blogger
  • Post published:May 18, 2016
  • Post category:Ankylosing Spondylitis

With baseball season upon us, we wanted to check in on our Ankylosing Spondylitis (AS) celebrity baseball player Franklin Guitierrez, who turned misfortune into a learning opportunity, and rises like the…

Continue Reading His New Nickname is “Death to Pitched Things”
Primetime Drama Features Sickle Cell Disease

Primetime Drama Features Sickle Cell Disease

  • Post author:Patient Worthy Contributor
  • Post published:May 18, 2016
  • Post category:Rare Disease/Sickle cell anemia

Are prime-time TV medical-dramas truly distorting patient expectations? We don't think so. Do you? Medical dramas aren't the only ones in today's television circuit that are incorporating rare diseases into plot lines…

Continue Reading Primetime Drama Features Sickle Cell Disease
Rob’s Journey with Acromegaly
photo by Sandro Georgi Photography

Rob’s Journey with Acromegaly

  • Post author:Rebekah
  • Post published:May 18, 2016
  • Post category:Acromegaly/Rare Disease

Above photo by Sandro Georgi Photography Rob has led an interesting life to say the least. He was in the navy for 20 years and has lived in Florida, Alaska, Diego…

Continue Reading Rob’s Journey with Acromegaly
What Is The Best Sour Face You Can Make?

What Is The Best Sour Face You Can Make?

  • Post author:Kristen Lord
  • Post published:May 18, 2016
  • Post category:Lyme Disease/Rare Disease

It's time to make some faces for Lyme. Do the Lyme Disease Challenge to spread the word about Lyme and have fun making funny faces with your friends! To learn…

Continue Reading What Is The Best Sour Face You Can Make?
When Life Gives You Lyme, Make Lymeade…

When Life Gives You Lyme, Make Lymeade…

  • Post author:Kristen Lord
  • Post published:May 18, 2016
  • Post category:Lyme Disease

Some people may not understand the seriousness of Lyme and what those effected with it, or even the people in those people's families go through. It can have so many…

Continue Reading When Life Gives You Lyme, Make Lymeade…
Maintaining a Balanced Lifestyle as a Caregiver

Maintaining a Balanced Lifestyle as a Caregiver

  • Post author:Patient Worthy Contributor
  • Post published:May 18, 2016
  • Post category:Myelodysplastic syndromes/Rare Disease

PW Contributor and caregiver Gloria Szanto, shares with us how she is able to live a healthy, family-filled, yet busy life while caregiving for her husband. Hi, my name is…

Continue Reading Maintaining a Balanced Lifestyle as a Caregiver
Easiest Gluten-Free, Dairy-Free Energy Pancakes
Pixabay

Easiest Gluten-Free, Dairy-Free Energy Pancakes

  • Post author:Patient Worthy Contributor
  • Post published:May 18, 2016
  • Post category:Lyme Disease/Rare Disease

I LOVE pancakes but part of having chronic Lyme means I have a pretty restricted diet. Additionally, I almost never have energy so I need something that will give me a…

Continue Reading Easiest Gluten-Free, Dairy-Free Energy Pancakes
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
Read Full Story Here
CLICK HERE TO 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