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Daily Archives: March 2, 2016

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Would You Go This Far To Save Your Child’s Life?

Would You Go This Far To Save Your Child’s Life?

  • Post author:Erica Zahn
  • Post published:March 2, 2016
  • Post category:Cystinosis

Why does time always have to run so short? Anyone who has ever experienced kidney dialysis knows the grueling process--the waiting game you play until a kidney becomes available for…

Continue Reading Would You Go This Far To Save Your Child’s Life?
Losing 150 lbs and Living with Dystonia

Losing 150 lbs and Living with Dystonia

  • Post author:Tom Seaman
  • Post published:March 2, 2016
  • Post category:Dystonia/Rare Disease

In the summer of 2001, my neck muscles began to involuntarily contract, causing my head to pull to the right. I had no idea what was wrong. My doctors were…

Continue Reading Losing 150 lbs and Living with Dystonia
D-Day (A Diagnosis!) Part 2

D-Day (A Diagnosis!) Part 2

  • Post author:Patient Worthy Contributor
  • Post published:March 2, 2016
  • Post category:Lyme Disease

“Chels, I really think you should get tested for LYME.” That's where we left off in Part 1 of Chelsea's post. And now... Part 2. I kind of balked at…

Continue Reading D-Day (A Diagnosis!) Part 2

Narcolepsy 101: For the Newly Diagnosed

  • Post author:Patient Worthy Contributor
  • Post published:March 2, 2016
  • Post category:Narcolepsy

Here at Patient Worthy, we've written quite a bit about Narcolepsy. However, we can't help but think that taking a step back to answer some basic questions about the disease is…

Continue Reading Narcolepsy 101: For the Newly Diagnosed
Need Help Managing a Rare Disease? There’s an App for That
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Need Help Managing a Rare Disease? There’s an App for That

  • Post author:Patient Worthy Contributor
  • Post published:March 2, 2016
  • Post category:Rare Disease

Technology today is taking us to new (un)comfortable heights, at a pace few would be surprised by. For those who are living with narcolepsy, this self-piloting drone could be a…

Continue Reading Need Help Managing a Rare Disease? There’s an App for That
Para mi yo más joven: Ame y acepte su trayectoria

Para mi yo más joven: Ame y acepte su trayectoria

  • Post author:Patient Worthy Contributor
  • Post published:March 2, 2016
  • Post category:Dysautonomia/POTS/Rare Disease

Estimada Jessica, Te miro y veo determinación. Las cosas son tan difíciles para usted ahora, corriendo de un hospital a otro. Yo sé que usted nunca imaginó que su vida…

Continue Reading Para mi yo más joven: Ame y acepte su trayectoria
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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