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Daily Archives: November 18, 2016

Home » Archives for November 18, 2016
Editor’s Choice: Dystonia Stories and Studies

Editor’s Choice: Dystonia Stories and Studies

  • Post author:Patient Worthy Contributor
  • Post published:November 18, 2016
  • Post category:Dystonia/Fabry Disease/Phenylketonuria/Rare Disease

Happy Pre-Thanksgiving Week Friends! It is almost Thanksgiving which is one of our FAVORITE holidays here at Patient Worthy. Why? Because on this holiday, we are focused on gratitude, family and…

Continue Reading Editor’s Choice: Dystonia Stories and Studies
A Boatload Of Missing Platelets Will Causes WHAT?
Source: commons.wikipedia.org

A Boatload Of Missing Platelets Will Causes WHAT?

  • Post author:Erica Zahn
  • Post published:November 18, 2016
  • Post category:Rare Disease/Thrombocytopenia

Immune thrombocytopenia purpura, or ITP, is a bleeding disorder caused by a lower than normal number of platelets, otherwise known as thrombocytes. Platelets are made in the bone marrow and when…

Continue Reading A Boatload Of Missing Platelets Will Causes WHAT?
Maybe You’ll Be Amazed When You Learn About Mastocytosis
Source: pixabay.com

Maybe You’ll Be Amazed When You Learn About Mastocytosis

  • Post author:Erica Zahn
  • Post published:November 18, 2016
  • Post category:mastocytosis/Rare Disease

Mastocytosis is a rare immune disorder that is broken down into two categories: cutaneous (CM) systemic (SM) It affects men, women, and children in equal numbers. Children are more likely to have…

Continue Reading Maybe You’ll Be Amazed When You Learn About Mastocytosis
Why You Need to Be Aware of Your Pituitary Gland
Source: pexels.com

Why You Need to Be Aware of Your Pituitary Gland

  • Post author:Erica Zahn
  • Post published:November 18, 2016
  • Post category:Acromegaly/Rare Disease

When the pituitary gland overproduces growth hormone (GH), its usually because a pituitary adenoma has formed. An adenoma is a benign tumor that causes the patient to continue to grow. Hands and feet…

Continue Reading Why You Need to Be Aware of Your Pituitary Gland
In a Battle with Gaucher, This 12-Year-Old is #Winning

In a Battle with Gaucher, This 12-Year-Old is #Winning

  • Post author:James Ernest Cassady
  • Post published:November 18, 2016
  • Post category:Gaucher Disease/Rare Disease

Gaining 51 pounds in three years may not seem like a lot, but for Amber Mickley it meant doubling in size. When she was nine years old, Amber was small for…

Continue Reading In a Battle with Gaucher, This 12-Year-Old is #Winning
What Happens When Only Seven People in the World Have a Rare Disease?
Source: pixabay.com

What Happens When Only Seven People in the World Have a Rare Disease?

  • Post author:Erica Zahn
  • Post published:November 18, 2016
  • Post category:Gorlin Chaudhry Moss syndrome/Rare Disease

Talk about rare diseases/ disorders/ conditions/ syndromes... there are only seven (SEVEN!!) documented cases of Gorlin Chaudhry Moss syndrome (GCM) in the world. All females. So, does as it come…

Continue Reading What Happens When Only Seven People in the World Have a Rare Disease?
Fabry Disease Clinical Trial, Balance
Pixabay

Fabry Disease Clinical Trial, Balance

  • Post author:Kathy Devanny
  • Post published:November 18, 2016
  • Post category:Fabry Disease/Rare Disease

Fabry Disease is the number number two Lysosomal Storage disease in terms of numbers affected. It is an X-linked disease, with males passing on the mutated allele to all of their…

Continue Reading Fabry Disease Clinical Trial, Balance
Como ser un heroe a pesar de vivir con una enfermedad rara
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Como ser un heroe a pesar de vivir con una enfermedad rara

  • Post author:Patient Worthy Contributor
  • Post published:November 18, 2016
  • Post category:Dystonia/Rare Disease

Todos sabemos lo que es tener un mal día, una mala semana, o incluso un mal año. Pero la cosa es que, con el tiempo, las cosas suelen trabajar fuera;…

Continue Reading Como ser un heroe a pesar de vivir con una enfermedad rara

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