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Inspiring Online: Woman Runs Gaucher Blog That’s So Much More!
PublicCo / Pixabay

Inspiring Online: Woman Runs Gaucher Blog That’s So Much More!

  • Post author:Lyssé Morganette
  • Post published:October 25, 2017
  • Post category:Gaucher Disease/Rare Disease

One young lady is working to bring awareness to Gaucher disease through blogging. Not only does Lauren Edwards share inspirational posts and pictures, she also shares the personal stories of…

Continue Reading Inspiring Online: Woman Runs Gaucher Blog That’s So Much More!
Monster March to Scare Off Childhood Cancer
Source: Pixabay

Monster March to Scare Off Childhood Cancer

  • Post author:Andres Rovira
  • Post published:October 25, 2017
  • Post category:Neuroblastoma

On October 22nd, the streets of Oakville, Ontario were sprawling with little monsters, marching out in support of their fellow Liam Cuttle and to raise awareness for Neuroblastoma. This rare…

Continue Reading Monster March to Scare Off Childhood Cancer
Living Longer with Cystic Fibrosis: A “40 & Fabulous” Mother’s Tale
Hans / Pixabay

Living Longer with Cystic Fibrosis: A “40 & Fabulous” Mother’s Tale

  • Post author:Al Pendleton
  • Post published:October 25, 2017
  • Post category:Cystic Fibrosis

Forty is the beginning of middle age. I remember when my father turned 40; everything was decorated black. Black balloons. Black streamers. Black icing on the cake. Actually, it was…

Continue Reading Living Longer with Cystic Fibrosis: A “40 & Fabulous” Mother’s Tale
How This Man Embraces the Simple Things After Meniere’s Disease Daignosis

How This Man Embraces the Simple Things After Meniere’s Disease Daignosis

  • Post author:PW Blogger
  • Post published:October 24, 2017
  • Post category:Meniere's Disease/Rare Disease

Memerto Tindongan, born and raised a member of the Ifugao tribe in the Phillippines, brought his traditional healing methods, crafting techniques, and old-world minimalism to the U.S. in 1991. As…

Continue Reading How This Man Embraces the Simple Things After Meniere’s Disease Daignosis
Mom and Daughter Take Ovarian Cancer Fight Online
GiselaFotografie / Pixabay

Mom and Daughter Take Ovarian Cancer Fight Online

  • Post author:Chloe Easterbrook
  • Post published:October 23, 2017
  • Post category:Ovarian Cancer

When I was 16 years old, I was uber-concerned about boys, prom, my pin-straight hair, boys, and how much gas I had in my car. But for 16-year-old Alexis Mae…

Continue Reading Mom and Daughter Take Ovarian Cancer Fight Online
Toddler With Guillain-Barre Syndrome Makes Heartwarming Recovery

Toddler With Guillain-Barre Syndrome Makes Heartwarming Recovery

  • Post author:Patient Worthy Contributor
  • Post published:October 20, 2017
  • Post category:Guillain Barré syndrome/Rare Disease

Two-year-old Max Payne from Immingham, England, holds onto the yellow rail of his play pen as he stands up. He glances up at the video camera for a moment, and then…

Continue Reading Toddler With Guillain-Barre Syndrome Makes Heartwarming Recovery
How This Man Uses Technology to Improve His Life with Stargardt Disease
Comfreak / Pixabay

How This Man Uses Technology to Improve His Life with Stargardt Disease

  • Post author:Al Pendleton
  • Post published:October 20, 2017
  • Post category:Stargardt Disease

I hear a lot of talk about technology these days. There seems to be a growing group of people who argue that it creates more problems than it solves. It…

Continue Reading How This Man Uses Technology to Improve His Life with Stargardt Disease
The Road to Graduation with Misophonia Isn’t Easy
Source: Pixabay

The Road to Graduation with Misophonia Isn’t Easy

  • Post author:Andres Rovira
  • Post published:October 20, 2017
  • Post category:Misophonia

Lucy Babcock is in her fourth year in college and so close to acquiring that diploma and pursuing grad school. Most people suffer from senioritis but Lucy is battling out…

Continue Reading The Road to Graduation with Misophonia Isn’t Easy
Help This Little Girl Battling Moebius Syndrome Get a New Heart
Source: Pixabay

Help This Little Girl Battling Moebius Syndrome Get a New Heart

  • Post author:Andres Rovira
  • Post published:October 20, 2017
  • Post category:hypoplastic left heart syndrome/Moebius Syndrome

Lily Ayres, at the ripe age of 2, has been fighting a rare disease ever since she was born. Little Lily suffers from Moebius syndrome and because of it, she…

Continue Reading Help This Little Girl Battling Moebius Syndrome Get a New Heart
You Can Help a 5-Year-Old Girl Facing Menopause Due to Addison’s Disease
Source: Pixabay

You Can Help a 5-Year-Old Girl Facing Menopause Due to Addison’s Disease

  • Post author:Andres Rovira
  • Post published:October 19, 2017
  • Post category:Addison's Disease

A young girl from Australia had her period when she was 4-years-old. According to Independent, young Emily Dover is well on her way to experiencing menopause at the young age…

Continue Reading You Can Help a 5-Year-Old Girl Facing Menopause Due to Addison’s Disease
Actress With Stiff Person Syndrome Tells Her Story

Actress With Stiff Person Syndrome Tells Her Story

  • Post author:Patient Worthy Contributor
  • Post published:October 19, 2017
  • Post category:Rare Disease/Stiff-Person Syndrome

Sherry Jo Ward sits in an orange armchair, playing harmonica in the center of the stage. She leans forward on the matching ottoman for emphasis. Her walker is never out…

Continue Reading Actress With Stiff Person Syndrome Tells Her Story
Her Daughter Had EDS, So the Doctor Called the Police
source: pixabay.com

Her Daughter Had EDS, So the Doctor Called the Police

  • Post author:Patient Worthy Contributor
  • Post published:October 18, 2017
  • Post category:Ehlers-Danlos Syndrome

Rebecca Wanosik was already a pro when it came to being a mom. Zedyn was her fifth child. She knew to trust her gut when, three weeks after her baby…

Continue Reading Her Daughter Had EDS, So the Doctor Called the Police
Playwright Rediscovers Disability Through Art
Source: Pixabay

Playwright Rediscovers Disability Through Art

  • Post author:Andres Rovira
  • Post published:October 18, 2017
  • Post category:Stickler Syndrome

James Moran suffers with Stickler syndrome and with it, is writing a new play to get in touch with his humanity The Assassination of Pope Urban II is a piece…

Continue Reading Playwright Rediscovers Disability Through Art
Billiard Player with Moebius Syndrome Takes the Gold
Source: Pixabay

Billiard Player with Moebius Syndrome Takes the Gold

  • Post author:Andres Rovira
  • Post published:October 17, 2017
  • Post category:Moebius Syndrome/Rare Disease

David Church is a 21-year-old Professional Billiards player and he has the will power of a Saint. He suffers from Moebius syndrome, an extremely rare neurological disorder that causes severe…

Continue Reading Billiard Player with Moebius Syndrome Takes the Gold
Children’s Health Doctors Get to the Bottom of Girl’s Neuroblastoma
Source: Pixabay

Children’s Health Doctors Get to the Bottom of Girl’s Neuroblastoma

  • Post author:Andres Rovira
  • Post published:October 17, 2017
  • Post category:Neuroblastoma

At first glance, little Victoria Thompson looks like your average happy and healthy toddler. You'd have no idea that once upon a time, she had a tumor on her kidney…

Continue Reading Children’s Health Doctors Get to the Bottom of Girl’s Neuroblastoma
ALD: Finding the Silver Lining of Memories
Source: Pixabay

ALD: Finding the Silver Lining of Memories

  • Post author:Al Pendleton
  • Post published:October 17, 2017
  • Post category:Adrenoleukodystrophy/Rare Disease

The memories we have of growing up should be the type that we look back on and smile about. That is not to say that they all should be happy…

Continue Reading ALD: Finding the Silver Lining of Memories
Boy with Rare Cancer Prepares For Favorite Spooky Holiday
Source: Pixabay

Boy with Rare Cancer Prepares For Favorite Spooky Holiday

  • Post author:Andres Rovira
  • Post published:October 16, 2017
  • Post category:Glioblastoma/Rare Disease

Brock Chadwick is a Halloween enthusiast and his love for all things spooky has shot around the world. Brock's parents asked strangers to send him Halloween greeting cards in order…

Continue Reading Boy with Rare Cancer Prepares For Favorite Spooky Holiday
Stevens-Johnson Syndrome Rashes Consume Girl’s Skin. Here’s How You Can Help.
Caption: Pixabay

Stevens-Johnson Syndrome Rashes Consume Girl’s Skin. Here’s How You Can Help.

  • Post author:Andres Rovira
  • Post published:October 16, 2017
  • Post category:Stevens-Johnson Syndrome

Phoenix Richey was living a happy and healthy life until things escalated toward the unexpected. During a tumultuous 24 hour period, a strange allergic reaction spread along 65 percent of…

Continue Reading Stevens-Johnson Syndrome Rashes Consume Girl’s Skin. Here’s How You Can Help.
How a Double Lung Transplant Saved the Life of a New Mom
Source: Pixabay

How a Double Lung Transplant Saved the Life of a New Mom

  • Post author:Minden Cantrell
  • Post published:October 13, 2017
  • Post category:Cystic Fibrosis/Rare Disease

Parenthood is one of the greatest joys for most people. But for Fanny Vlahos, a young Michigan woman, holding her infant son is nothing short of miraculous. Vlahos has cystic…

Continue Reading How a Double Lung Transplant Saved the Life of a New Mom
Sweet Iris Leads the Charge against GM1
Javier-Rodriguez / Pixabay

Sweet Iris Leads the Charge against GM1

  • Post author:Chloe Easterbrook
  • Post published:October 13, 2017
  • Post category:Juvenile GM1 gangliosidosis/Rare Disease

Behind her smile of gleaming baby teeth and her bright, sparkling eyes hides a deadly disease. Sweet Iris has a rare condition; one she can barely pronounce—juvenile GM1 gangliosidosis. Yet…

Continue Reading Sweet Iris Leads the Charge against GM1
Pinky Swear That You’ll Support Kids with Cancer
Source: Pixabay

Pinky Swear That You’ll Support Kids with Cancer

  • Post author:Andres Rovira
  • Post published:October 11, 2017
  • Post category:Osteosarcoma

Residents of Omaha ran together during a 5K and 1K run to raise money for kids with cancer and their families at Lewis and Clark Landing. Hy-Vee and Pinky Swear…

Continue Reading Pinky Swear That You’ll Support Kids with Cancer
You Won’t Believe How Long This GNE Myopathy Diagnosis Took!
[Source: pixabay.com]

You Won’t Believe How Long This GNE Myopathy Diagnosis Took!

  • Post author:Octavia Walker
  • Post published:October 10, 2017
  • Post category:GNE Myopathy

According to a first-person story on the Global Genes' Rare Daily website, Tara Voogel and her family were plagued by a medical mystery for 40 years before Tara finally found…

Continue Reading You Won’t Believe How Long This GNE Myopathy Diagnosis Took!
Lessons from the Rare Disease Community

Lessons from the Rare Disease Community

  • Post author:Denise Crompton
  • Post published:October 10, 2017
  • Post category:Mucolipidosis Type III/Rare Disease

There are people in society who seek to divide us based on what our differences are, such as color, ethnicity, religion, dialect, lifestyle, political persuasion, neighborhood, level of education and…

Continue Reading Lessons from the Rare Disease Community
Help Jake Get a Golden Ticket on October 7th!
Source: Pixabay

Help Jake Get a Golden Ticket on October 7th!

  • Post author:Andres Rovira
  • Post published:October 5, 2017
  • Post category:Pelizaeus Merzbacher Disease

When three-year-old Jake Burgman was born, something was wrong. Three months into his life, the Burgman's noticed that Jake was unable to lift his own head, among other developmental delays.…

Continue Reading Help Jake Get a Golden Ticket on October 7th!
Teen Shaves Head and Shows Ovarian Cancer Who is Boss
Source: www.pixabay.com

Teen Shaves Head and Shows Ovarian Cancer Who is Boss

  • Post author:Chloe Easterbrook
  • Post published:October 5, 2017
  • Post category:Ovarian Cancer/Rare Disease

There are a lot of stupid videos on the internet. It’s amazing what can catch on and go viral. Some videos are funny and feature fur-babies being adorable. Those can…

Continue Reading Teen Shaves Head and Shows Ovarian Cancer Who is Boss
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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
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