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: April 25, 2016

  1. Home>
  2. 2016>
  3. April>
  4. 25
Here’s How To Get Help When CGD Gets You Down
Source: pixabay.com

Here’s How To Get Help When CGD Gets You Down

  • Post author:Erica Zahn
  • Post published:April 25, 2016
  • Post category:CGD/Rare Disease

Chronic granulomatous disorder, or CGD, is an inherited immune disorder where certain cells (called phagocytes) are unable fight bacteria and fungi. Symptoms include swollen lymph nodes, pus-filled bumps beneath the…

Continue Reading Here’s How To Get Help When CGD Gets You Down
Doctors Called Her CVID Fake. The Truth? They Suck!

Doctors Called Her CVID Fake. The Truth? They Suck!

  • Post author:Erica Zahn
  • Post published:April 25, 2016
  • Post category:CVID/Rare Disease

Common variable immune deficiency (CVID) occurs when the body doesn't produce sufficient amounts of certain antibodies (also called immunoglobulins) in the liquid part of the blood. The result is the patient's immune…

Continue Reading Doctors Called Her CVID Fake. The Truth? They Suck!
You Have Dystonia and No Money? Politicians say, So What?

You Have Dystonia and No Money? Politicians say, So What?

  • Post author:Erica Zahn
  • Post published:April 25, 2016
  • Post category:Dystonia/Rare Disease

I read an article about several people in Norfolk who were having their benefits cut by the government, and silly me, I assumed I was reading about people located in…

Continue Reading You Have Dystonia and No Money? Politicians say, So What?
Fight for a Lyme Disease Diagnosis
Source: pixabay.com

Fight for a Lyme Disease Diagnosis

  • Post author:Alisha Stone
  • Post published:April 25, 2016
  • Post category:Lyme Disease

And you thought walking down a dark alley was dangerous?! Well, try your own back yard! Vanessa Boyd is fighting for her life having been most likely bitten by a…

Continue Reading Fight for a Lyme Disease Diagnosis
How to Enjoy Exciting Adventure Travel with PI
Source: pixabay.com

How to Enjoy Exciting Adventure Travel with PI

  • Post author:Alisha Stone
  • Post published:April 25, 2016
  • Post category:CGD/Primary Immunodeficiencies/Rare Disease/SCID

Living and Traveling with Primary Immunodeficiency Okay, just because you’re living with Primary Immunodeficiency (PI), doesn’t mean that you’ve got to be a little wall flower or confine yourself to…

Continue Reading How to Enjoy Exciting Adventure Travel with PI
This Little Girl Will Make You Want to Cycle for Glut1 Research

This Little Girl Will Make You Want to Cycle for Glut1 Research

  • Post author:Ronald Ledsen
  • Post published:April 25, 2016
  • Post category:GLUT1 DS/Rare Disease/Timely

Hey, do you love bike riding? Competitively or otherwise? And are you going to be in the Philly area around May 7th? Then you should consider taking part in the…

Continue Reading This Little Girl Will Make You Want to Cycle for Glut1 Research
11 Things This Dysautonomia Super Mom Needs You To Know
Pixabay

11 Things This Dysautonomia Super Mom Needs You To Know

  • Post author:Winnie Nash
  • Post published:April 25, 2016
  • Post category:Dysautonomia/Rare Disease

Susan realized there might be more to her son’s quirks—like his inability to breast-feed, the continuous projectile vomiting, and his taking an oddly long time to drink a bottle—when a doctor said…

Continue Reading 11 Things This Dysautonomia Super Mom Needs You To Know
Cómo tus calcetines pueden ayudarte

Cómo tus calcetines pueden ayudarte

  • Post author:Patient Worthy Contributor
  • Post published:April 25, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

Los pacientes con espondilitis anquilosante pueden sufrir terribles dolores de espalda. Almohadillas térmicas son una opción fácil para ayudar a aumentar el flujo de sangre y aliviar un poco el…

Continue Reading Cómo tus calcetines pueden ayudarte
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