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Daily Archives: May 5, 2016

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Ankylosing Spondylitis: Living Like a Rock Star
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Ankylosing Spondylitis: Living Like a Rock Star

  • Post author:PW Blogger
  • Post published:May 5, 2016
  • Post category:Ankylosing Spondylitis

Ankylosing spondylitis is a rare, autoimmune disorder. It is a chronic form of inflammatory arthritis that primarily affects the base of the spine, bones and joints. It has also been referred…

Continue Reading Ankylosing Spondylitis: Living Like a Rock Star
Unwelcomed Advice After My Dystonia Diagnosis
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Unwelcomed Advice After My Dystonia Diagnosis

  • Post author:Tom Seaman
  • Post published:May 5, 2016
  • Post category:Dystonia/Rare Disease

Living with a chronic health condition that dramatically alters one’s life can be very confusing, scary, and lonely. I lived in this mental misery for years when I developed dystonia,…

Continue Reading Unwelcomed Advice After My Dystonia Diagnosis
Parkinson’s Disease: What Saved Michael J. Fox

Parkinson’s Disease: What Saved Michael J. Fox

  • Post author:PW Blogger
  • Post published:May 5, 2016
  • Post category:Parkinson's Disease/Rare Disease

Michael J. Fox was the known for years as the teenage financial wizard on the television series, Family Ties. Later he went on to become a time traveling teen in…

Continue Reading Parkinson’s Disease: What Saved Michael J. Fox
Meme Feel Good – Live Life

Meme Feel Good – Live Life

  • Post author:Patient Worthy Contributor
  • Post published:May 5, 2016
  • Post category:Cystinosis

Continue Reading Meme Feel Good – Live Life
This Little Girl’s Medical Journey Will Hit You Right in the Feels Part 1

This Little Girl’s Medical Journey Will Hit You Right in the Feels Part 1

  • Post author:Rebekah
  • Post published:May 5, 2016
  • Post category:Rare Disease

This article is the first in a series written by Carolina, Mariana's mother. Carolina hopes that sharing their story will increase awareness. Ever since Mariana was born, her life has…

Continue Reading This Little Girl’s Medical Journey Will Hit You Right in the Feels Part 1
Harriett Tubman & Narcolepsy: A Sleeper in the $20 Bill Sweepstakes

Harriett Tubman & Narcolepsy: A Sleeper in the $20 Bill Sweepstakes

  • Post author:Donald Blake
  • Post published:May 5, 2016
  • Post category:Narcolepsy/Rare Disease

The steely visage of our seventh president Andrew Jackson will disappear from the face of the $20 bill. Yes, “Old Hickory” has been fired from top billing on the venerable $20 note…

Continue Reading Harriett Tubman & Narcolepsy: A Sleeper in the $20 Bill Sweepstakes
Meet Rob: Acromegaly Video Series Part 1

Meet Rob: Acromegaly Video Series Part 1

  • Post author:Rebekah
  • Post published:May 5, 2016
  • Post category:Acromegaly/Rare Disease

My name is Rob. I’m originally from Miami, Florida, born and raised, moved out of there back in 1981 and joined the Navy; spent 20 years on active duty. Transitioned to…

Continue Reading Meet Rob: Acromegaly Video Series Part 1
What is the Lyme Disease Challenge?
Source: Jeff Clements Photography (https://www.facebook.com/Jeff-Clements-Photography-138022931501/)

What is the Lyme Disease Challenge?

  • Post author:Patient Worthy Contributor
  • Post published:May 5, 2016
  • Post category:Lyme Disease/Rare Disease

As you know, May is Lyme Disease Awareness Month and we encourage you to participate! One of my favorite ways to get involved is doing the Lyme Disease Challenge. I took…

Continue Reading What is the Lyme Disease Challenge?
Ambas caras de la moneda: El doctor también es el Paciente

Ambas caras de la moneda: El doctor también es el Paciente

  • Post author:Patient Worthy Contributor
  • Post published:May 5, 2016
  • Post category:CVID/Rare Disease

Psiquiatra Dr. Jennifer Pate, de 47 años, recibe infusiones intravenosas de inmunoglobulina que salvan vidas cada tres semanas. Esto no es por elección, porque sin ellos, su sistema inmunológico está…

Continue Reading Ambas caras de la moneda: El doctor también es el Paciente
The Walking Meme – Ticks are Basically Zombies

The Walking Meme – Ticks are Basically Zombies

  • Post author:Patient Worthy Contributor
  • Post published:May 5, 2016
  • Post category:Lyme Disease

Continue Reading The Walking Meme – Ticks are Basically Zombies
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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