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Daily Archives: January 6, 2016

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If You Have Cystic Fibrosis, Are You Crazy Not To Want a Transplant?

If You Have Cystic Fibrosis, Are You Crazy Not To Want a Transplant?

  • Post author:Alisha Stone
  • Post published:January 6, 2016
  • Post category:Cystic Fibrosis/Rare Disease

I read an article recently by Andrew Smith that has me baffled—not by him, but rather the alarming facts that he discussed about people with cystic fibrosis (CF) who elect…

Continue Reading If You Have Cystic Fibrosis, Are You Crazy Not To Want a Transplant?
NOMID or Not, This Young Woman is Going Strong

NOMID or Not, This Young Woman is Going Strong

  • Post author:Rebekah
  • Post published:January 6, 2016
  • Post category:CAPS/Neonatal onset multisystem inflammatory disease/Rare Disease

Janelle is a 21 year old student at the University of Nebraska at Kearney. She has a great sense of humor, has shown horses for years and someday she wants…

Continue Reading NOMID or Not, This Young Woman is Going Strong
This Anti-Inflammatory Shake Tastes Like Ice Cream

This Anti-Inflammatory Shake Tastes Like Ice Cream

  • Post author:Patient Worthy Contributor
  • Post published:January 6, 2016
  • Post category:Rare Disease

Years before I was diagnosed with late-stage chronic Lyme disease, I had been falsely diagnosed with a chest disease, chronically swollen lymph nodes, IBS and mild ADD with fatigue. With…

Continue Reading This Anti-Inflammatory Shake Tastes Like Ice Cream
This Daughter Destroys the Wheelchair Stereotype With Letter to Mom

This Daughter Destroys the Wheelchair Stereotype With Letter to Mom

  • Post author:Farrah Fontaine
  • Post published:January 6, 2016
  • Post category:Dystonia/Rare Disease

Most girls rebel at the idea of ever becoming their mother. The passive aggressive judgments, the dancing in the grocery store, and of course, the embarrassing stories. As described by…

Continue Reading This Daughter Destroys the Wheelchair Stereotype With Letter to Mom

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