• 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
Click Here To Share Your Story with Chronic Obstructive Pulmonary Disease (COPD)
Click Here to Read Real Patient & Caregiver Stories
Click Here To Share Your Story With MASH

Daily Archives: February 18, 2016

  1. Home>
  2. 2016>
  3. February>
  4. 18
How to Combat Sjogren’s Cotton Mouth the Patient Worthy Way!

How to Combat Sjogren’s Cotton Mouth the Patient Worthy Way!

  • Post author:EmpatheticBadass
  • Post published:February 18, 2016
  • Post category:Rare Disease/Sjogren's Syndrome

In a post just in time for last year's Sjögren’s Awareness Month, blogger Michelle Traub, who happens to have Sjögren’s herself, offered seven tips she uses to live everyday with a…

Continue Reading How to Combat Sjogren’s Cotton Mouth the Patient Worthy Way!
One Drop of Baby Blood Could Save $$$ Millions $$$ Thanks to Boy in Bubble

One Drop of Baby Blood Could Save $$$ Millions $$$ Thanks to Boy in Bubble

  • Post author:Erica Zahn
  • Post published:February 18, 2016
  • Post category:Rare Disease/SCID

Severe Combined Immune Deficiency (SCID), a primary immune deficiency, was once a fatal disease but is now considered a "pediatric emergency," needing immediate diagnosis and treatment. If it's caught right…

Continue Reading One Drop of Baby Blood Could Save $$$ Millions $$$ Thanks to Boy in Bubble
Goodbye to the Dog Days of Summer, Says Girl with Cystinosis

Goodbye to the Dog Days of Summer, Says Girl with Cystinosis

  • Post author:Kiki Jones
  • Post published:February 18, 2016
  • Post category:Cystinosis

Life with chronic illness requires adaptation, and for kids diagnosed with cystinosis, adapting starts young. Sarah Larimore was barely out of infancy when her parents first heard the word “cystinosis.”…

Continue Reading Goodbye to the Dog Days of Summer, Says Girl with Cystinosis
This Amazing Woman’s POTS Won’t Stop Her From Being Tops
https://pixabay.com/en/board-school-task-auto-task-928392/

This Amazing Woman’s POTS Won’t Stop Her From Being Tops

  • Post author:James Ernest Cassady
  • Post published:February 18, 2016
  • Post category:POTS/Rare Disease

Crista Procopio is a self-described type A personality. "I never, ever let anything stop me from getting involved and succeeding," she says. "When I set a goal, I always reach…

Continue Reading This Amazing Woman’s POTS Won’t Stop Her From Being Tops
La Disautonomia no puede perjudicar la ambición de esta chica
We're number one, and we want to be number one for you!

La Disautonomia no puede perjudicar la ambición de esta chica

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

En 2013 Nisa despertó en el suelo necesitan puntos de sutura en la cabeza. Ella no tenía ningún recuerdo de caer. Mirando hacia atrás, ese fue el comienzo de su…

Continue Reading La Disautonomia no puede perjudicar la ambición de esta chica
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
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