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Daily Archives: February 4, 2016

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The Truth About EDS, Hypermobility, And Double-Jointedness

The Truth About EDS, Hypermobility, And Double-Jointedness

  • Post author:Erica Zahn
  • Post published:February 4, 2016
  • Post category:Ehlers-Danlos Syndrome/Rare Disease

Natasha Lipman, a chronic illness blogger, was watching TV one morning, when something rankled her ire. The ITV show, This Morning, was doing a segment on whether or not children…

Continue Reading The Truth About EDS, Hypermobility, And Double-Jointedness
This Guy With POTS Is Just as Inspiring as the Famous People He Photographs

This Guy With POTS Is Just as Inspiring as the Famous People He Photographs

  • Post author:EmpatheticBadass
  • Post published:February 4, 2016
  • Post category:POTS/Rare Disease

Simply put, Adam Jacobs’ photos are breathtaking. And it’s quite possible that he never would’ve discovered his talent if he hadn’t picked up a camera as a way to distract…

Continue Reading This Guy With POTS Is Just as Inspiring as the Famous People He Photographs
You Won’t Believe What Happened to These Twins With Cystinosis

You Won’t Believe What Happened to These Twins With Cystinosis

  • Post author:Ronald Ledsen
  • Post published:February 4, 2016
  • Post category:Cystinosis

As any parent of a child with cystinosis will tell you, life with the disease can be like a roller coaster. Some days are filled with highs; others with lows.…

Continue Reading You Won’t Believe What Happened to These Twins With Cystinosis
What You Need to Know About Newborn Testing for Tyrosinemia in Canada

What You Need to Know About Newborn Testing for Tyrosinemia in Canada

  • Post author:Alisha Stone
  • Post published:February 4, 2016
  • Post category:Tyrosinemia

I feel so inspired by Canadian doctors and their healthcare system! I recently read an interesting post from Julie; she and her husband live in Canada and are the proud…

Continue Reading What You Need to Know About Newborn Testing for Tyrosinemia in Canada
Conozcamos a Benjamín: Lo que nadie supo y todo lo que tuvo que superar

Conozcamos a Benjamín: Lo que nadie supo y todo lo que tuvo que superar

  • Post author:Patient Worthy Contributor
  • Post published:February 4, 2016
  • Post category:Rare Disease

Mi nombre es Benjamin. Soy el padre orgulloso de un sabueso que me encanta tomar en caminatas. Soy un jugador y una cabeza armario metálico. Estoy 6'2 "y pesa 215…

Continue Reading Conozcamos a Benjamín: Lo que nadie supo y todo lo que tuvo que superar

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