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Daily Archives: October 20, 2016

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How to Improve the Dystonia Profile
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How to Improve the Dystonia Profile

  • Post author:Sabina Kennedy
  • Post published:October 20, 2016
  • Post category:Dystonia/Rare Disease

Moving up the ranks in a disease state profile may be difficult, but not impossible. There are tried and tested ways to heighten awareness and get the dystonia message out…

Continue Reading How to Improve the Dystonia Profile
Hidden Opportunities Within Our “Problems”
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Hidden Opportunities Within Our “Problems”

  • Post author:Tom Seaman
  • Post published:October 20, 2016
  • Post category:Dystonia/Rare Disease

Life is filled with endless opportunities. Sometimes the opportunities, or silver lining, are hard to see when we have problems with our health, finances, family, or career, but they exist.…

Continue Reading Hidden Opportunities Within Our “Problems”
The Power of Positive Affirmations

The Power of Positive Affirmations

  • Post author:Tom Seaman
  • Post published:October 20, 2016
  • Post category:Dystonia/Rare Disease

Most people have probably heard the saying, “change your thoughts, change your life.” There is great truth to this because how we think can significantly impact our mental and physical…

Continue Reading The Power of Positive Affirmations
How NOT to be Defined by Dystonia

How NOT to be Defined by Dystonia

  • Post author:Sabina Kennedy
  • Post published:October 20, 2016
  • Post category:Dystonia/Rare Disease

Have you ever wanted to push your own limits and break out of your comfort zone? If so, you’ll know that it is difficult because getting out of your routine…

Continue Reading How NOT to be Defined by Dystonia
25 Years of Breathing Through a Straw
 my sister's wedding day about 1 month post double lung transplant

25 Years of Breathing Through a Straw

  • Post author:Patient Worthy Contributor
  • Post published:October 20, 2016
  • Post category:Cystic Fibrosis/Rare Disease

I have been living with Cystic Fibrosis (CF) since birth. I was lucky that I was diagnosed early and started on medicine straight away. One in every 25 people carry the…

Continue Reading 25 Years of Breathing Through a Straw
How One Amazing Teen Supports Familial Amyloidosis
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How One Amazing Teen Supports Familial Amyloidosis

  • Post author:Sabina Kennedy
  • Post published:October 20, 2016
  • Post category:Amyloidosis/Rare Disease

Have you lost a friend or family member? Do you wonder how you can memorialize or honor their life? This is the dilemma of Kate Shooshan, whose father died of familial…

Continue Reading How One Amazing Teen Supports Familial Amyloidosis
This Diagnosis Was a Shocking Surprise
Pixabay

This Diagnosis Was a Shocking Surprise

  • Post author:Erica Zahn
  • Post published:October 20, 2016
  • Post category:CVID/Rare Disease

In the immunodeficiency department, Cat Latuszek hit the unfortunate jackpot. After a lifetime of ear infections, she was finally diagnosed with Common Variable Immune Deficiency, or CVID, at the age…

Continue Reading This Diagnosis Was a Shocking Surprise
De todas las personas, Alex Trebek le salvó la vida a este locutor de radio

De todas las personas, Alex Trebek le salvó la vida a este locutor de radio

  • Post author:Patient Worthy Contributor
  • Post published:October 20, 2016
  • Post category:Acromegaly/Rare Disease

Ir en su programa de radio promedio sitio web a la salida de la BIOS de sus anfitriones favoritos, poniendo una cara de esos tonos frescos cobardes que escuchas en…

Continue Reading De todas las personas, Alex Trebek le salvó la vida a este locutor de radio
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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