• Rare Disease News
  • [email protected]
Facebook-f Instagram Linkedin-in Pinterest Twitter
  • About
    • Meet Our Contributors
    • Meet Our Partners
    • Meet Our Team
    • Collaborative Content On Patient Worthy
    • Contact Us
  • Diseases
  • Share Your Story
    • Patient Worthy Content Submission Guidelines
    • Patient Worthy Writing Prompts
    • Submit Your Story
    • Patient Stories
  • Resources
    • Library
    • Memes
    • Events
    • Patient Worthy FAQs
  • Listen
  • Languages
    • Spanish / Español
    • Russian / русский
    • French / Français
  • Log In
Menu
  • About
    • Meet Our Contributors
    • Meet Our Partners
    • Meet Our Team
    • Collaborative Content On Patient Worthy
    • Contact Us
  • Diseases
  • Share Your Story
    • Patient Worthy Content Submission Guidelines
    • Patient Worthy Writing Prompts
    • Submit Your Story
    • Patient Stories
  • Resources
    • Library
    • Memes
    • Events
    • Patient Worthy FAQs
  • Listen
  • Languages
    • Spanish / Español
    • Russian / русский
    • French / Français
  • Log In
  • Join PW

Syringomyelia

Home » Syringomyelia
Rare Classroom: Syringomelia
source: shutterstock

Rare Classroom: Syringomelia

  • Post author:James Moore
  • Post published:January 20, 2023
  • Post category:Syringomelia hyperkeratosis/Syringomyelia

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

Continue Reading Rare Classroom: Syringomelia
28-Year-Old Working to Raise Syringomyelia Awareness
source: pixabay.com

28-Year-Old Working to Raise Syringomyelia Awareness

  • Post author:Jessica Lynn
  • Post published:June 20, 2022
  • Post category:Syringomyelia

When Alicia McLeod entered her 20s, she began noticing that she was showing a few concerning symptoms. Eventually, Alicia visited the doctors, where she was diagnosed with syringomyelia. According to…

Continue Reading 28-Year-Old Working to Raise Syringomyelia Awareness
Raffle Benefits Teen with Syringomyelia
TBIT / Pixabay

Raffle Benefits Teen with Syringomyelia

  • Post author:Jessica Lynn
  • Post published:September 29, 2021
  • Post category:Chiari Malformation/Syringomyelia

I don’t know about you, but I always get incredibly happy when I see stories about a community rallying to support one of its own members. For example, those in…

Continue Reading Raffle Benefits Teen with Syringomyelia
Community Brings Christmas Parade to 7-Year-Old Girl’s Door 
Source: Pixabay

Community Brings Christmas Parade to 7-Year-Old Girl’s Door 

  • Post author:Patient Worthy Contributor
  • Post published:December 18, 2020
  • Post category:Chiari Malformation/Rare Disease/Syringomyelia

By Danielle Bradshaw from In the Cloud Copy For the streets of downtown Wylie, Texas, Christmas came twice. It was only a week after the town threw their yearly Christmas…

Continue Reading Community Brings Christmas Parade to 7-Year-Old Girl’s Door 
Teenage Dancer Affected by Chiari Malformation
source: pixabay.com

Teenage Dancer Affected by Chiari Malformation

  • Post author:Patient Worthy Contributor
  • Post published:September 4, 2020
  • Post category:Chiari Malformation/Syringomyelia

by Danielle Bradshaw from In The Cloud Copy Elaina Pechota loves to dance. Back in 2018, however, the teen had a fall during one of her classes, and her entire…

Continue Reading Teenage Dancer Affected by Chiari Malformation
Chiari Malformation Patient to Shave Her Head to Say “Thank You” to Hospital
source: pixabay.com

Chiari Malformation Patient to Shave Her Head to Say “Thank You” to Hospital

  • Post author:Patient Worthy Contributor
  • Post published:March 24, 2020
  • Post category:Chiari Malformation/Syringomyelia

By Jodee Redmond from In The Cloud Copy Frankie Hewitson spent more than her fair share of time in the hospital during her childhood. The 27-year-old was diagnosed with three…

Continue Reading Chiari Malformation Patient to Shave Her Head to Say “Thank You” to Hospital
Mother Fights For Life-Changing Surgery For Her Son With Scoliosis
Source: Pixabay

Mother Fights For Life-Changing Surgery For Her Son With Scoliosis

  • Post author:Meagan Fulps
  • Post published:February 13, 2018
  • Post category:Chiari Malformation/Syringomyelia

Tyler Chambers, 9-years-old, suffers from scoliosis, with a 65 degree bent spine. His mother is fighting to get him the surgery he needs to rid away his intensifying pain, reports…

Continue Reading Mother Fights For Life-Changing Surgery For Her Son With Scoliosis

OF INTEREST


XLH Image


X-Linked Hypophosphatemia: Unnderstanding this Hereditary, Progressive, and Lifelong Condition


podcast setup on a desk


Catalyst’s LEMS Aware Podcast Helps Connect Patients

Patient Stories

GET INVOLVED

Make a difference, share your experiences and get paid. Opt-in & join Patient Worthy’s panel for paid opportunities such as Surveys, Market Research, Patient Advisory Panels & much more.

JOIN NOW

STUDY OF THE WEEK

Welcome to Study of the Week. We go in-depth and select a study we think is of particular interest, discussing details, explaining its importance, who may be impacted and lots more!

READ MORE

RARE CLASSROOM

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most mysterious diseases and conditions. This series is an opportunity to learn the basics about some of the diseases that almost no one hears much about.

READ MORE
SIGN UP FOR OUR NEWSLETTER
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
Become a Contributor

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 Policy
Privacy Policy for CA Residents
EU Privacy Notice

© Copyright 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