• 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 Parkinson's Disease
Click Here to Read More And Take Action!
Click Here To Share Your Story With MASH

Author: Patient Worthy Contributor

This author has written 2539 articles
  1. Home>
  2. Patient Worthy Contributor>
  3. Page 80
This is Why Venus Williams Should Be Your New Favorite Player

This is Why Venus Williams Should Be Your New Favorite Player

  • Post author:Patient Worthy Contributor
  • Post published:October 8, 2015
  • Post category:Rare Disease/Sjogren's Syndrome

Athletes always seem to be on a level beyond reach of those around them, much like a revered saint or goddess. Their physical prowess is awe-inspiring, the pinnacle of human strength and…

Continue Reading This is Why Venus Williams Should Be Your New Favorite Player

Would You Trust Complete Strangers With Your Life Like This Guy?

  • Post author:Patient Worthy Contributor
  • Post published:October 8, 2015
  • Post category:CAPS/FCAS/Rare Disease

So, let’s say you’ve lived most of your life with a bucket of symptoms you’ve never understood, and that doctors have never been able to diagnose. Symptoms like joint pain,…

Continue Reading Would You Trust Complete Strangers With Your Life Like This Guy?

Quebec Is Good For Something: Tyrosinemia Treatment Research

  • Post author:Patient Worthy Contributor
  • Post published:October 7, 2015
  • Post category:Rare Disease/Tyrosinemia

Who knew that good ol' colonialism could be a leading cause of rare diseases?! At least, that's the case for many Quebecers. Tyrosinemia, which affects about 1 in 100,000 babies…

Continue Reading Quebec Is Good For Something: Tyrosinemia Treatment Research

This Muckle-Well’s Girl is Jumping For Joy After Being Pain-Free

  • Post author:Patient Worthy Contributor
  • Post published:October 6, 2015
  • Post category:CAPS/Muckle-Wells Syndrome/Rare Disease

For anyone suffering from chronic pain, you know what it’s like. If you haven’t had that luxury, here’s what it feels like: You feel like Frankenstein. Your friends and family…

Continue Reading This Muckle-Well’s Girl is Jumping For Joy After Being Pain-Free

5 Things Lost with Acromegaly (and How to Improve Those Suckers)

  • Post author:Patient Worthy Contributor
  • Post published:October 6, 2015
  • Post category:Acromegaly/Rare Disease

When you’ve got a rare disease, people are bound to give you The Look. You know the one. It says: “Oh, bless your heart; you’ve lost so much.” And you…

Continue Reading 5 Things Lost with Acromegaly (and How to Improve Those Suckers)

How a Walk in the Zoo Helped Two Little Girls with Dystonia

  • Post author:Patient Worthy Contributor
  • Post published:October 6, 2015
  • Post category:Dystonia/Rare Disease

For parents of children with dystonia, that frustration is a horrible, ongoing reality. Parents like Melissa Phelps from Gallaten, Kentucky knows this all too well—her young daughters Madison and Olivia…

Continue Reading How a Walk in the Zoo Helped Two Little Girls with Dystonia

How One New Jersey Town is Bringing in the Big Guns to Beat Dystonia

  • Post author:Patient Worthy Contributor
  • Post published:October 5, 2015
  • Post category:Dystonia/Rare Disease

Right now, you and I are smack dab in the middle of one of history’s greatest information ages. We have more ways to learn about the world around us than…

Continue Reading How One New Jersey Town is Bringing in the Big Guns to Beat Dystonia

Moms Know Best (and Doctors Need to Listen)

  • Post author:Patient Worthy Contributor
  • Post published:October 5, 2015
  • Post category:Rare Disease/Tyrosinemia

Okay, Dr. House: We've got first-time parents who claim their newborn is "cranky, fussy, projectile vomiting, and refusing to eat." Although they also say the child has a distended stomach,…

Continue Reading Moms Know Best (and Doctors Need to Listen)
Meme Monday: Raising Awareness for #CureforCaps

Meme Monday: Raising Awareness for #CureforCaps

  • Post author:Patient Worthy Contributor
  • Post published:October 5, 2015
  • Post category:CAPS/FCAS/Muckle-Wells Syndrome/Neonatal onset multisystem inflammatory disease

After a great week of telling the honest stories of people living with invisible illnesses for invisible illness awareness week, we want to focus this Meme Monday on a group…

Continue Reading Meme Monday: Raising Awareness for #CureforCaps
Living with a Rare Disease: You are not Alone

Living with a Rare Disease: You are not Alone

  • Post author:Patient Worthy Contributor
  • Post published:October 4, 2015
  • Post category:Rare Disease

13 years ago, after being diagnosed with a chronic illness, Lisa Copen couldn’t sleep.  She was trying to figure out how to manage her new normal. She just wanted to…

Continue Reading Living with a Rare Disease: You are not Alone
Meet Caroline: Her Ambition Prevails Over Hidden Obstacles

Meet Caroline: Her Ambition Prevails Over Hidden Obstacles

  • Post author:Patient Worthy Contributor
  • Post published:October 3, 2015
  • Post category:Rare Disease

I'm Caroline McCarry.  I'm a daughter and a friend; a sister and a cousin; a baker and a writer; a cheerleader and a person who has suffered from OCD and…

Continue Reading Meet Caroline: Her Ambition Prevails Over Hidden Obstacles
Meet Charlie: A Rebel with a Worthy Cause

Meet Charlie: A Rebel with a Worthy Cause

  • Post author:Patient Worthy Contributor
  • Post published:October 2, 2015
  • Post category:CVID/Rare Disease

I'm Charlie, a 27 year old working in digital marketing in Auckland, NZ. I'm a big fan of good coffee, good beer, good wine, good food - and lots of it! I…

Continue Reading Meet Charlie: A Rebel with a Worthy Cause
Meet Virginia: The Invisible Little Girl, Now Making Herself Known

Meet Virginia: The Invisible Little Girl, Now Making Herself Known

  • Post author:Patient Worthy Contributor
  • Post published:October 2, 2015
  • Post category:Rare Disease

“It’s funny. The day you feared the most, the day you realized you were not going to climb Mount Everest has come and gone, and you did not collapse in…

Continue Reading Meet Virginia: The Invisible Little Girl, Now Making Herself Known
Meet Benjamin: What No One Knew He Had to Overcome

Meet Benjamin: What No One Knew He Had to Overcome

  • Post author:Patient Worthy Contributor
  • Post published:October 1, 2015
  • Post category:Uncategorized

My name is Benjamin. I'm the proud father of a bloodhound who I love to take on hikes. I'm a gamer and a closet metal head. I'm 6'2" and weigh 215 pounds…

Continue Reading Meet Benjamin: What No One Knew He Had to Overcome
Meet Hannah: What You Don’t See

Meet Hannah: What You Don’t See

  • Post author:Patient Worthy Contributor
  • Post published:October 1, 2015
  • Post category:Rare Disease

Meet Hannah, you may not not realize all that she struggles with from looking at her.  She is twelve. This is Hannah's #InvisibleFight With Albrights Hereditary Osteodystrophy and congenital hypothyroidism.…

Continue Reading Meet Hannah: What You Don’t See
Meet Carla: She Goes 12 Rounds with Pain Daily

Meet Carla: She Goes 12 Rounds with Pain Daily

  • Post author:Patient Worthy Contributor
  • Post published:October 1, 2015
  • Post category:Complex Regional Pain Syndrome/Rare Disease

I am Carla Fairchild. I am forty-seven years old, and family and fashion mean everything to me; they are me. They both are my love, my life, and my passion. Owning a…

Continue Reading Meet Carla: She Goes 12 Rounds with Pain Daily
Meet Lisa D.: My Life in the Shadows with Myasthenia Gravis

Meet Lisa D.: My Life in the Shadows with Myasthenia Gravis

  • Post author:Patient Worthy Contributor
  • Post published:September 30, 2015
  • Post category:Myasthenia Gravis/Rare Disease

My name is Lisa. I am a 3x cancer survivor thriver, and I am living with the rare autoimmune disease Myasthenia Gravis. I am a mother, a wife and an…

Continue Reading Meet Lisa D.: My Life in the Shadows with Myasthenia Gravis
Meet Bonnie: The Red Sox Fan Worthy of a Different HoF

Meet Bonnie: The Red Sox Fan Worthy of a Different HoF

  • Post author:Patient Worthy Contributor
  • Post published:September 30, 2015
  • Post category:Rare Disease

My name is Bonnie and I’ve been fighting for my life for eighteen years, but I have been fighting an invisible fight for the past twelve. This is #myinvisiblefight story.…

Continue Reading Meet Bonnie: The Red Sox Fan Worthy of a Different HoF
Meet Shelly: She Has More Strength Than Most People Ever Need.

Meet Shelly: She Has More Strength Than Most People Ever Need.

  • Post author:Patient Worthy Contributor
  • Post published:September 30, 2015
  • Post category:Rare Disease

My name is Shelly. I am a Christian, a wife, a mom, and a writer- a published author in fact, and that is how the world knows me. But the…

Continue Reading Meet Shelly: She Has More Strength Than Most People Ever Need.
Meet Maria: Behind Closed Doors

Meet Maria: Behind Closed Doors

  • Post author:Patient Worthy Contributor
  • Post published:September 29, 2015
  • Post category:Complex Regional Pain Syndrome/Rare Disease

I'm Maria; I'm a wife and mother, fashionista and shoe enthusiast.  Not all of my days are bad, but no one knows about the really bad days because I hide…

Continue Reading Meet Maria: Behind Closed Doors
Meet Melissa: The Selfless Baker

Meet Melissa: The Selfless Baker

  • Post author:Patient Worthy Contributor
  • Post published:September 29, 2015
  • Post category:Rare Disease

Meet Melissa, a wife, mother and advocate. Patient Worthy interviewed Melissa about her #InvisibleIllness - gastroparesis. Almost two years ago, un-welcomed and without warning, gastroparesis enetered Melissa's life. “I was fine one day…

Continue Reading Meet Melissa: The Selfless Baker
Meet Oakley: A Little Boy with a Big Fight

Meet Oakley: A Little Boy with a Big Fight

  • Post author:Patient Worthy Contributor
  • Post published:September 29, 2015
  • Post category:Rare Disease

This is my son Oakley, a five year old with  an adorable smile, who loves the Ninja Turtles, and you'd never guess what we've been through. My little man has…

Continue Reading Meet Oakley: A Little Boy with a Big Fight
Meme Monday: The Invisible Illness Awareness Edition

Meme Monday: The Invisible Illness Awareness Edition

  • Post author:Patient Worthy Contributor
  • Post published:September 28, 2015
  • Post category:Rare Disease

It's #IIWK15 (Invisible Illness Awareness Week) and it's impossible for us to be more pumped about it! If you have no idea what #IIWK15 is all about, check out blogger…

Continue Reading Meme Monday: The Invisible Illness Awareness Edition
Meet Lisa Copen: The Voice of Invisible Illness Awareness

Meet Lisa Copen: The Voice of Invisible Illness Awareness

  • Post author:Patient Worthy Contributor
  • Post published:September 28, 2015
  • Post category:Rare Disease

My name is Lisa and I am living with rheumatoid arthritis (RA) and fibromyalgia. #myinvisiblefight is ongoing, but I have faith, family, and friends.  This is my story. I was just…

Continue Reading Meet Lisa Copen: The Voice of Invisible Illness Awareness
Invisible Illness Awareness Week 2015 Starts Today!

Invisible Illness Awareness Week 2015 Starts Today!

  • Post author:Patient Worthy Contributor
  • Post published:September 28, 2015
  • Post category:Rare Disease

This introduction to Invisible Illness Awareness Week or as we like to call it #IIWK15 was written for publication on Patient Worthy by Lisa Copen, the founder and director of II…

Continue Reading Invisible Illness Awareness Week 2015 Starts Today!
  • Go to the previous page
  • 1
  • …
  • 77
  • 78
  • 79
  • 80
  • 81
  • 82
  • 83
  • …
  • 88
  • Go to the next page
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