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Daily Archives: December 5, 2016

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Why You Have No Excuse Not to Join an EDS Foundation
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Why You Have No Excuse Not to Join an EDS Foundation

  • Post author:Farrah Fontaine
  • Post published:December 5, 2016
  • Post category:Ehlers-Danlos Syndrome/Rare Disease/Timely

If you have Ehlers-Danlos Syndrome (EDS), life can get a bit complicated. Between doctors not knowing what you have to trying to figure out what treatments to use, it can…

Continue Reading Why You Have No Excuse Not to Join an EDS Foundation
This is the Fashionable Approach to Fighting MG and Bipolar Disorder

This is the Fashionable Approach to Fighting MG and Bipolar Disorder

  • Post author:Ronald Ledsen
  • Post published:December 5, 2016
  • Post category:Myasthenia Gravis/Rare Disease

When you live with a life-changing disease like myasthenia gravis, or MG, it’s normal to feel down or have difficulty adjusting to the loss of control. For many, it’s easy…

Continue Reading This is the Fashionable Approach to Fighting MG and Bipolar Disorder
Newborn Screenings Can Detect Fabry Disease Before the Damage Starts
[Source: Pixabay.com]

Newborn Screenings Can Detect Fabry Disease Before the Damage Starts

  • Post author:Erica Zahn
  • Post published:December 5, 2016
  • Post category:Fabry Disease/Rare Disease

If you had the opportunity to gaze into a crystal ball and see the future, would you do it? And if you did, and you noticed something amiss, would you…

Continue Reading Newborn Screenings Can Detect Fabry Disease Before the Damage Starts
The 5 Tricks You Need to Know to Exercise with AS
Source: www.pixabay.com

The 5 Tricks You Need to Know to Exercise with AS

  • Post author:Farrah Fontaine
  • Post published:December 5, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

When you have a rare disease like ankylosing spondylitis (AS), one of the most annoying things your doctor can say to you is: "Well, you need to exercise more." Why…

Continue Reading The 5 Tricks You Need to Know to Exercise with AS
You’ll Want to Know About This Exciting New ALS Development!
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You’ll Want to Know About This Exciting New ALS Development!

  • Post author:EmpatheticBadass
  • Post published:December 5, 2016
  • Post category:Amyotrophic Lateral Sclerosis/Rare Disease

I know it’s perverse, but the second thing that popped into my head when I read about iron-based proteins and ALS, was a toy I loved as a kid. There…

Continue Reading You’ll Want to Know About This Exciting New ALS Development!
Conozcamos a esta poderosa mujer comenzando una conversacion sobre POTS
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Conozcamos a esta poderosa mujer comenzando una conversacion sobre POTS

  • Post author:Patient Worthy Contributor
  • Post published:December 5, 2016
  • Post category:Dysautonomia/POTS/Rare Disease

Oye, ¿te gustaría ser capaz de usar pantalones cortos en cualquier momento que desee, incluso en pleno invierno? Suena bien, ¿verdad? ¿Qué hay de poder comer tanta sal como desee,…

Continue Reading Conozcamos a esta poderosa mujer comenzando una conversacion sobre POTS

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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