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: February 3, 2016

  1. Home>
  2. 2016>
  3. February>
  4. 3
What Does it Feel Like to Have Acromegaly?

What Does it Feel Like to Have Acromegaly?

  • Post author:Patient Worthy Contributor
  • Post published:February 3, 2016
  • Post category:Rare Disease

Patient Worthy recently asked the President of the Acromegaly Association Jill Cisco, what it felt like to have acromegaly. Below is her response. Acromegaly is a disease that affects a person…

Continue Reading What Does it Feel Like to Have Acromegaly?
Dystonia Robs Many Musicians of Their Greatest Gift

Dystonia Robs Many Musicians of Their Greatest Gift

  • Post author:Erica Zahn
  • Post published:February 3, 2016
  • Post category:Dystonia/Rare Disease

You spent years taking piano lessons, spent thousands of hours practicing, and were enjoying your professional career with an orchestra. Then IT happened. Every time you sit down on the piano bench, your…

Continue Reading Dystonia Robs Many Musicians of Their Greatest Gift
Sam and Charlie: A POTS Love Story That Will Make You Cry

Sam and Charlie: A POTS Love Story That Will Make You Cry

  • Post author:Lady Kehveen Abernathy
  • Post published:February 3, 2016
  • Post category:POTS/Rare Disease

Personally, I'm a cat person, but I've never had any doubt that Dog is Man's best friend. And this story has pretty much solidified that concept for me. Sam Sutcliffe…

Continue Reading Sam and Charlie: A POTS Love Story That Will Make You Cry
Teenage Girl Proves Cheating Death Is Actually a Thing

Teenage Girl Proves Cheating Death Is Actually a Thing

  • Post author:Lady Kehveen Abernathy
  • Post published:February 3, 2016
  • Post category:Wilson Disease

On a Friday night, Torrie Kruse's world went black. The teenager can't recall being rushed to the hospital. She can't recall doctors scrambling around her hospital bed, trying to make sense of the problem. She…

Continue Reading Teenage Girl Proves Cheating Death Is Actually a Thing
Conozcamos a Hannah: Lo que tus ojos no ven

Conozcamos a Hannah: Lo que tus ojos no ven

  • Post author:Patient Worthy Contributor
  • Post published:February 3, 2016
  • Post category:Rare Disease

Conoce a Hannah, no puede no darse cuenta de todo lo que ella lucha con mirarla. Ella tiene doce años de edad. Esta es #InvisibleFight de Hannah Con Osteodistrofia hereditaria…

Continue Reading Conozcamos a Hannah: Lo que tus ojos no ven

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