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MWS

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Un viaje de Muckle-Wells: La historia de Skyelah

Un viaje de Muckle-Wells: La historia de Skyelah

  • Post author:Jean Martell
  • Post published:March 7, 2017
  • Post category:CAPS/Español/Muckle-Wells Syndrome/Rare Disease

  Cuando Skyelah nació, su madre Angela inmediatamente notó que algo era diferente. Ella tenía tres otros hijos que arrullaron y sonreían como niños. Skyelah rara vez lo hacía, de…

Continue Reading Un viaje de Muckle-Wells: La historia de Skyelah
There’s No One Size Fits All Approach to CAPS
Source: Pexels.com

There’s No One Size Fits All Approach to CAPS

  • Post author:Farrah Fontaine
  • Post published:January 6, 2017
  • Post category:CAPS/Rare Disease

When it comes to autoinflammatory conditions, like CAPS, there is no one size fits all approach. There are a lot of variables--that's what makes these conditions so difficult to diagnosis,…

Continue Reading There’s No One Size Fits All Approach to CAPS
La historia de una mama con una enfermedad rara en un episodio de House
Pixabay

La historia de una mama con una enfermedad rara en un episodio de House

  • Post author:Patient Worthy Contributor
  • Post published:December 15, 2016
  • Post category:CAPS/Muckle-Wells Syndrome/Rare Disease

Es una especie de insignia de honor cuando una enfermedad rara consigue tiempo de emisión en un programa de televisión quira a nivel internacional . Y tal vez los médicos…

Continue Reading La historia de una mama con una enfermedad rara en un episodio de House
Vi que en un programa de televisión! Una historia inspiradora de Muckle-Wells
Pixabay

Vi que en un programa de televisión! Una historia inspiradora de Muckle-Wells

  • Post author:Patient Worthy Contributor
  • Post published:November 12, 2016
  • Post category:CAPS/Muckle-Wells Syndrome/Rare Disease

Es una especie de una insignia de honor cuando una enfermedad rara consigue tiempo de emisión en un programa de televisión a nivel internacional querida. Y tal vez los médicos…

Continue Reading Vi que en un programa de televisión! Una historia inspiradora de Muckle-Wells
Why the Death of This MWS Foundation is Actually Okay
Source: pixabay.com

Why the Death of This MWS Foundation is Actually Okay

  • Post author:LBC
  • Post published:November 7, 2016
  • Post category:CAPS/Muckle-Wells Syndrome/Rare Disease

Recently, a friend shared her concern for a colleague whose child is suffering from a rare disease called Muckle Wells Syndrome (MWS), a form of Cryopyrin-associated-periodic-syndrome (CAPS). The story prompted…

Continue Reading Why the Death of This MWS Foundation is Actually Okay
A Muckle-Wells Journey: Skyelah’s Story

A Muckle-Wells Journey: Skyelah’s Story

  • Post author:Rebekah
  • Post published:December 7, 2015
  • Post category:CAPS/Muckle-Wells Syndrome/Rare Disease

When Skyelah was born her mother Angela immediately noticed something was different. She had three other children who had all cooed and smiled as infants. Skyelah rarely did, in fact,…

Continue Reading A Muckle-Wells Journey: Skyelah’s Story
The CAPS Trio and How They Compare

The CAPS Trio and How They Compare

  • Post author:Rebekah
  • Post published:December 2, 2015
  • Post category:CAPS/Rare Disease

CAPS FCAS, MWS, and NOMID all fall under CAPS with mutations in the same gene and share some overlapping symptoms.  However, each has unique distinctions  and there can also can…

Continue Reading The CAPS Trio and How They Compare
I Saw That on House! An Inspiring Mom’s Rare Disease Story
Pixabay

I Saw That on House! An Inspiring Mom’s Rare Disease Story

  • Post author:EmpatheticBadass
  • Post published:November 5, 2015
  • Post category:CAPS/Muckle-Wells Syndrome/Rare Disease

w an withIt’s kind of a badge of honor when a rare disease gets airtime on an internationally-loved television show. And maybe the doctors at Canada’s McGill University Health Centre…

Continue Reading I Saw That on House! An Inspiring Mom’s Rare Disease Story
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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