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: June 23, 2016

  1. Home>
  2. 2016>
  3. June>
  4. 23
The Worst Question You Can Ever Ask and Why
Source: www.pixabay.com

The Worst Question You Can Ever Ask and Why

  • Post author:Winnie Nash
  • Post published:June 23, 2016
  • Post category:Mucopolysaccharidosis/Rare Disease

For those unfamiliar with it, mucopolysaccharidoses (MPS) is a wicked, wicked disease. It comes in a couple of different forms, but the form one little boy lives with is MPS II,…

Continue Reading The Worst Question You Can Ever Ask and Why

This Rare Dad Owns His Dystonia

  • Post author:Kristen Lord
  • Post published:June 23, 2016
  • Post category:Dystonia/Rare Disease

Photo by Sandro Georgi Photography "Don’t let Dystonia define who you are. Don’t let it control every single aspect of your life. For myself, it is part of me. It is…

Continue Reading This Rare Dad Owns His Dystonia
How to Tell If Your IPF is Getting Better

How to Tell If Your IPF is Getting Better

  • Post author:EmpatheticBadass
  • Post published:June 23, 2016
  • Post category:IPF/Rare Disease/Timely

A May 25, 2016 article from Pulmonary Fibrosis News reports that Italian researchers are making headway in determining if a person’s IPF is progressing or not (which is in the…

Continue Reading How to Tell If Your IPF is Getting Better
6 Annoying POTS Symptoms Explained in GIFs

6 Annoying POTS Symptoms Explained in GIFs

  • Post author:Patient Worthy Contributor
  • Post published:June 23, 2016
  • Post category:Dysautonomia/POTS/Rare Disease

If you have Postural Orthostatic Tachycardia Syndrome (POTS) then you are familiar with its on-and-off symptoms and living with generally unreliable health. What's more, is you may try to explain it…

Continue Reading 6 Annoying POTS Symptoms Explained in GIFs
Inspiring Swimmer Refuses to Be Carried Out on the Tides of MG
Source: www.pixabay.com

Inspiring Swimmer Refuses to Be Carried Out on the Tides of MG

  • Post author:Ronald Ledsen
  • Post published:June 23, 2016
  • Post category:Myasthenia Gravis/Rare Disease

As if you needed further proof that the human spirit can accomplish incredible things, here’s a great story from “across the pond.” In 2012, 15-year-old British student Jessica Gillatt was…

Continue Reading Inspiring Swimmer Refuses to Be Carried Out on the Tides of MG
Espondilitis anquilosante: raro y difícil de diagnosticar

Espondilitis anquilosante: raro y difícil de diagnosticar

  • Post author:Patient Worthy Contributor
  • Post published:June 23, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

Con el tiempo, se habrán dado cuenta de que tiene dolor en el cuello, y que está más rígido en la mañana de lo que son por la tarde. El…

Continue Reading Espondilitis anquilosante: raro y difícil de diagnosticar

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