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Daily Archives: August 9, 2016

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This Girl Is Killing It in a Clinical Trial

This Girl Is Killing It in a Clinical Trial

  • Post author:PW Blogger
  • Post published:August 9, 2016
  • Post category:Rare Disease/Wilson Disease

Emma Gaul’s story is a good reminder of how quickly life’s plans can change when your body turns against itself. Less than two years ago she was a vibrant and…

Continue Reading This Girl Is Killing It in a Clinical Trial
Dystonia is Making My Brain Crazy

Dystonia is Making My Brain Crazy

  • Post author:Patient Worthy Contributor
  • Post published:August 9, 2016
  • Post category:Dystonia/Rare Disease

My brain is CRAZY! At least, that’s the way I feel. I cannot explain how infuriating it is to have what I refer to as, a dystonia brain! So, what’s…

Continue Reading Dystonia is Making My Brain Crazy
Bringing Awareness: Idiopathic Pulmonary Fibrosis (IPF)

Bringing Awareness: Idiopathic Pulmonary Fibrosis (IPF)

  • Post author:Kristen Lord
  • Post published:August 9, 2016
  • Post category:IPF/Rare Disease

Idiopathic Pulmonary Fibrosis or IPF is a disease where the tissue in the lungs becomes scarred and stiff making it harder for a person to breathe. When the tissue thickens the…

Continue Reading Bringing Awareness: Idiopathic Pulmonary Fibrosis (IPF)
The Day I Woke Up With POTS
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The Day I Woke Up With POTS

  • Post author:Patient Worthy Contributor
  • Post published:August 9, 2016
  • Post category:Dysautonomia/POTS

When I was 14 or 15 years old, my father was deployed and the family was a little anxious say the least. That's why, when I woke up one spring…

Continue Reading The Day I Woke Up With POTS
Hopeful News for Massachusetts Lyme Sufferers

Hopeful News for Massachusetts Lyme Sufferers

  • Post author:Patient Worthy Contributor
  • Post published:August 9, 2016
  • Post category:Lyme Disease/Rare Disease

As someone who went through long-term antibiotic treatment, I can speak to the tremendous financial strain it had on my family. Well, if you live in Massachusetts, new legislative action…

Continue Reading Hopeful News for Massachusetts Lyme Sufferers
Es la respuesta a las convulsiones  de los pacientes  del GLUT1 DS realmente un termostato?

Es la respuesta a las convulsiones de los pacientes del GLUT1 DS realmente un termostato?

  • Post author:Patient Worthy Contributor
  • Post published:August 9, 2016
  • Post category:GLUT1 DS/Rare Disease

Glucosa. Esto significa que el azúcar, ¿verdad? Está en su cuerpo, ¿verdad? Pero, ¿cómo se transportan y cómo sabe que su cuerpo la cantidad que necesita para el transporte? Lo…

Continue Reading Es la respuesta a las convulsiones de los pacientes del GLUT1 DS realmente un termostato?

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