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Daily Archives: July 28, 2015

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Cops Raid These Kids’ Lemonade Stand, Ends Better Than You Think

  • Post author:Patient Worthy Contributor
  • Post published:July 28, 2015
  • Post category:Cystinosis/Rare Disease

Jake Krahe, a youngster from Montville Township, Ohio,  has been living with a rare disease since he was 19 months old 19 Action News reports. The specific diagnosis is cystinosis, a…

Continue Reading Cops Raid These Kids’ Lemonade Stand, Ends Better Than You Think

More Orphans Need to be Treated Like These FCS Patients

  • Post author:Patient Worthy Contributor
  • Post published:July 28, 2015
  • Post category:Familial Hypercholesterolemia/Rare Disease

If you’re one of the very few people in U.S. living with familial chylomicronemia syndrome (FCS), the odds are good you that you know more about it than your family…

Continue Reading More Orphans Need to be Treated Like These FCS Patients

Is the Answer to Glut1 DS Patients’ Seizures Really a Thermostat?

  • Post author:Patient Worthy Contributor
  • Post published:July 28, 2015
  • Post category:GLUT1 DS/Rare Disease

Glucose. It means sugar, right? It's in your body, right? But how does it get transported, and how does your body know how much it needs to transport? Most importantly,…

Continue Reading Is the Answer to Glut1 DS Patients’ Seizures Really a Thermostat?
How to Stop Your Child’s Seizures with a Magic Bean
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How to Stop Your Child’s Seizures with a Magic Bean

  • Post author:Patient Worthy Contributor
  • Post published:July 28, 2015
  • Post category:GLUT1 DS/Rare Disease

Have you ever heard of Glut1 deficiency? Based on a story featured on News-Medical, neither had the parents of their diagnosed daughter 4-year-old Chloe Olivarez. Glut1 deficiency is a rare…

Continue Reading How to Stop Your Child’s Seizures with a Magic Bean

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