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Daily Archives: June 20, 2016

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Rare Dads: The Wish Of A Father Of Two

Rare Dads: The Wish Of A Father Of Two

  • Post author:Kristen Lord
  • Post published:June 20, 2016
  • Post category:Acromegaly/Rare Disease

Photo by Sandro Georgi Photography "My hope is that my condition finds cures so that other people don’t have to go through it and their kids don’t have to see…

Continue Reading Rare Dads: The Wish Of A Father Of Two
Why Lyme Disease is the Lying Disease
[Source: Pixabay.com]

Why Lyme Disease is the Lying Disease

  • Post author:James Ernest Cassady
  • Post published:June 20, 2016
  • Post category:Lyme Disease

Recently, we at PatientWorthy told you why checking for ticks is the most important thing for you to do this summer, and the proper way to make ticks pull out…

Continue Reading Why Lyme Disease is the Lying Disease
What To Know When You Have EDS and Scoliosis
Pixabay

What To Know When You Have EDS and Scoliosis

  • Post author:Erica Zahn
  • Post published:June 20, 2016
  • Post category:Ehlers-Danlos Syndrome/Rare Disease

Ehlers-Danlos Syndrome is a complex genetic disorder that is caused by defects in the body's structural proteins, also known as collagen. Hypermobility of the joints is one of the most…

Continue Reading What To Know When You Have EDS and Scoliosis
Showing Support For Myasthenia Gravis

Showing Support For Myasthenia Gravis

  • Post author:Kristen Lord
  • Post published:June 20, 2016
  • Post category:Myasthenia Gravis

You know what a cool word is? Twibbon What is a Twibbon? Those things you see on people's profile pictures on Facebook and Twitter to show support for what they…

Continue Reading Showing Support For Myasthenia Gravis
How to Have a Say in Tomorrow’s MG Research

How to Have a Say in Tomorrow’s MG Research

  • Post author:Ronald Ledsen
  • Post published:June 20, 2016
  • Post category:Myasthenia Gravis/Rare Disease

One of the hardest parts of living with a rare disease like myasthenia gravis is just finding someone else who lives with the disease. MG patients are few and far…

Continue Reading How to Have a Say in Tomorrow’s MG Research
Treatment Today and Why It’s Giving You Permission to Hope
Pixabay

Treatment Today and Why It’s Giving You Permission to Hope

  • Post author:Erica Zahn
  • Post published:June 20, 2016
  • Post category:Huntington's disease/Rare Disease

In the past, a diagnosis of Huntington's disease offered the patient absolutely no hope. It was understood that a downward trajectory was the only way the disease would play out,…

Continue Reading Treatment Today and Why It’s Giving You Permission to Hope
This Kid Will Make You Wonder What You’re Doing With Your Life
Source: www.pixabay.com

This Kid Will Make You Wonder What You’re Doing With Your Life

  • Post author:Winnie Nash
  • Post published:June 20, 2016
  • Post category:Myasthenia Gravis/Rare Disease

Jeff Joseph. Record Spotlight reports he’s not like every 24-year-old trying to figure their way through this so-called “real world.” He’s different—in challenging ways and in freakin’ cool ways. Joseph…

Continue Reading This Kid Will Make You Wonder What You’re Doing With Your Life
5 maneras de mejorar tu experiencia con espondilitis anquilosante

5 maneras de mejorar tu experiencia con espondilitis anquilosante

  • Post author:Patient Worthy Contributor
  • Post published:June 20, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

Podrias llevar un estilo de vida más saludable y ayudar a disminuir algunos de los síntomas de la espondilitis anquilosante y la frecuencia de los brotes siguiendo estos pasos. 1.…

Continue Reading 5 maneras de mejorar tu experiencia con espondilitis anquilosante

Featured


Picture of Family


Metastatic Breast Cancer: Navigating Grief


Picture of Ralph Family walking


Rethinking What It Means to Live With Acromegaly


Illustration of mentor program members


The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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