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Daily Archives: November 22, 2016

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Why the Best Partner for Tourette’s is HRT
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Why the Best Partner for Tourette’s is HRT

  • Post author:Alisha Stone
  • Post published:November 22, 2016
  • Post category:Rare Disease/Tourette syndrome

I dig those peeps at WorryWiseKids.org who are helping to raise the bar to better understand Tourette’s syndrome (TS). Their mission is to lessen the suffering that children with Tourette's…

Continue Reading Why the Best Partner for Tourette’s is HRT
How To Stop Bad Cholesterol in Its Tracks
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How To Stop Bad Cholesterol in Its Tracks

  • Post author:Lady Kehveen Abernathy
  • Post published:November 22, 2016
  • Post category:Familial Hypercholesterolemia/Homozygous Familial Hypercholesterolemia/Rare Disease

Let's talk cholesterol—the bad kind, 'cause there're different kinds. LDL cholesterol, or low-density lipoprotein cholesterol, is the kind you DON'T want, because it can lead to a whole host of…

Continue Reading How To Stop Bad Cholesterol in Its Tracks
Duchenne Muscular Dystrophy Wins One With the FDA
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Duchenne Muscular Dystrophy Wins One With the FDA

  • Post author:Erica Zahn
  • Post published:November 22, 2016
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

A few months ago, I went on a rant about the FDA's failure to approve a drug that would benefit children with Duchenne muscular dystrophy, or DMD, a muscle-wasting disease.…

Continue Reading Duchenne Muscular Dystrophy Wins One With the FDA
Non-24 Disorder Can Throw Your Entire Life Off Schedule
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Non-24 Disorder Can Throw Your Entire Life Off Schedule

  • Post author:Erica Zahn
  • Post published:November 22, 2016
  • Post category:Non 24 hour sleep wake disorder/Rare Disease

My cousin, Richard, lost his sight to retinitis pigmentosa when he was 35 years old. He adjusted considerably well due to his vision loss being so gradual. He had already…

Continue Reading Non-24 Disorder Can Throw Your Entire Life Off Schedule
Why Looking for a Miracle is the Best Thing Since Sliced Bread
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Why Looking for a Miracle is the Best Thing Since Sliced Bread

  • Post author:Sabina Kennedy
  • Post published:November 22, 2016
  • Post category:Primary sclerosing cholangitis

This stage of life is hard. I’m talking right now to all the moms who are probably somewhere between late 20’s to early 40’s. You likely have a kid or…

Continue Reading Why Looking for a Miracle is the Best Thing Since Sliced Bread
Why a TM Mom was Right About Research
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Why a TM Mom was Right About Research

  • Post author:Sabina Kennedy
  • Post published:November 22, 2016
  • Post category:Rare Disease/Transverse myelitis

Over the past few months, I’ve been trying to support my dear friend Julie, as she cares for and mothers her child, who was recently diagnosed with transverse myelitis (TM).…

Continue Reading Why a TM Mom was Right About Research
Un padre carga a su hijo discapacitado a la escuela, asi responde la ciudad

Un padre carga a su hijo discapacitado a la escuela, asi responde la ciudad

  • Post author:Patient Worthy Contributor
  • Post published:November 22, 2016
  • Post category:CAPS/FCAS/Rare Disease

No hace mucho tiempo, leí un artículo sobre la lucha heroica de un padre para luchar contra la injusticia de su hijo que está viviendo con una enfermedad autoinmune genética…

Continue Reading Un padre carga a su hijo discapacitado a la escuela, asi responde la ciudad

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