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

mystery diagnosis

  1. Home>
  2. mystery diagnosis
El miedo, la frustración, la esperanza, aceptación: 4 luchas de un diagnóstico de ICV

El miedo, la frustración, la esperanza, aceptación: 4 luchas de un diagnóstico de ICV

  • Post author:Patient Worthy Contributor
  • Post published:September 5, 2016
  • Post category:CVID/Primary Immunodeficiencies

Kathy Antilla recuerda el momento en que escuchó a su hijo, Isaac, decir esas palabras que ella pensó que nunca oiría: "¡Mamá! ¡Mírame! Soy como un niño normal ahora." En…

Continue Reading El miedo, la frustración, la esperanza, aceptación: 4 luchas de un diagnóstico de ICV
Estos hermanos comparten el mismo desorden misterioso, y les esta amenazando la vida

Estos hermanos comparten el mismo desorden misterioso, y les esta amenazando la vida

  • Post author:Patient Worthy Contributor
  • Post published:June 8, 2016
  • Post category:CVID/Rare Disease

Su hermano dijo que el diagnóstico era imposible; Ella no estaba tan segura En febrero de 2006, Sheryl Stein, de Arlington, Virginia, sabía que algo estaba mal. Ella sufría de…

Continue Reading Estos hermanos comparten el mismo desorden misterioso, y les esta amenazando la vida

Fear, Frustration, Hope, Acceptance: 4 Struggles of a CVID Diagnosis

  • Post author:Patient Worthy Contributor
  • Post published:August 4, 2015
  • Post category:CVID/Primary Immunodeficiencies

Kathy Antilla recalls the moment she heard her son, Issac, say those words she thought she'd never hear: "Mom! Look at me! I'm just like a normal kid now." In…

Continue Reading Fear, Frustration, Hope, Acceptance: 4 Struggles of a CVID Diagnosis
Siblings Share Life-Threatening Mystery Disorder- What was it?

Siblings Share Life-Threatening Mystery Disorder- What was it?

  • Post author:Patient Worthy Contributor
  • Post published:June 16, 2015
  • Post category:CVID/Rare Disease

Her Brother Said The Diagnosis Was Impossible; She Wasn't So Sure In February of 2006, Sheryl Stein of Arlington, Virginia, knew something was wrong. She was suffering from nosebleeds and…

Continue Reading Siblings Share Life-Threatening Mystery Disorder- What was it?
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)
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