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Angie’s Message on the Power of Positivity
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Angie’s Message on the Power of Positivity

  • Post author:Patient Worthy Contributor
  • Post published:October 25, 2016
  • Post category:Rare Disease

PW Contributor Angie just blogged about one of the most important messages us in the rare disease world need to hear: The Power of Positivity. Read more below: Positivity is hands…

Continue Reading Angie’s Message on the Power of Positivity
How to Take the Headache Out of Dystonia
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How to Take the Headache Out of Dystonia

  • Post author:Sabina Kennedy
  • Post published:October 25, 2016
  • Post category:Dystonia/Rare Disease

Who doesn’t love a good story? A story that speaks to us. A story that spins a negative into a positive. When I listen to a person tell a story, I…

Continue Reading How to Take the Headache Out of Dystonia
Aplastic Anemia and Zika Virus: An Important Story That Will Shake Your Core
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Aplastic Anemia and Zika Virus: An Important Story That Will Shake Your Core

  • Post author:Alisha Stone
  • Post published:October 21, 2016
  • Post category:Aplastic anemia/Rare Disease

I recently read an article about a 22-year-old man from Utah who’d just returned from a missionary service in Brazil and was diagnosed with aplastic anemia. This is so sad…

Continue Reading Aplastic Anemia and Zika Virus: An Important Story That Will Shake Your Core
A Dystonia Q & A

A Dystonia Q & A

  • Post author:Patient Worthy Contributor
  • Post published:October 21, 2016
  • Post category:Dystonia/Rare Disease

September was dystonia awareness month [but that doesn't mean we can't keep promoting awareness]! Dystonia is a rare neurological movement disorder that can cause involuntary muscle spasms and contractions, tremors,…

Continue Reading A Dystonia Q & A
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”
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
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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
In the Midst of Chaos, These Parents are Making it Work
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In the Midst of Chaos, These Parents are Making it Work

  • Post author:Alisha Stone
  • Post published:October 19, 2016
  • Post category:Aplastic anemia/Rare Disease

I recently read an article about a little boy who’d been diagnosed with aplastic anemia, a mysterious and very serious illness that can strike adults as well as children. It’s…

Continue Reading In the Midst of Chaos, These Parents are Making it Work
What I Learned in Lyme Recovery
Alexis and her husband

What I Learned in Lyme Recovery

  • Post author:Patient Worthy Contributor
  • Post published:October 19, 2016
  • Post category:Lyme Disease/Rare Disease

I am beyond excited to report I have begun the process of recovery from late stage, chronic Lyme disease. A year ago, I was reading through articles, clicking on everything…

Continue Reading What I Learned in Lyme Recovery
Amazing Boy With Muscular Dystrophy Shocks His Community

Amazing Boy With Muscular Dystrophy Shocks His Community

  • Post author:Farrah Fontaine
  • Post published:October 19, 2016
  • Post category:Duchenne Muscular Dystrophy

When you were a kid and planning your future, what events did you imagine? Your first car? Your prom? Your graduation? Your wedding? For this boy with Duchenne muscular dystrophy, he…

Continue Reading Amazing Boy With Muscular Dystrophy Shocks His Community
This Family’s Curse is Actually a Blessing in Disguise
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This Family’s Curse is Actually a Blessing in Disguise

  • Post author:Chelsea
  • Post published:October 18, 2016
  • Post category:Rare Disease

Shelly Mountain has traced her family history and shares how von Willebrand disease (VWD) has impacted six generations very differently since her great-great grandmother's era. Medical treatment was difficult back…

Continue Reading This Family’s Curse is Actually a Blessing in Disguise
One Amazing Woman, One Amazing Video: See Her Cushing’s Journey
Source: pexels.com

One Amazing Woman, One Amazing Video: See Her Cushing’s Journey

  • Post author:Erica Zahn
  • Post published:October 17, 2016
  • Post category:Cushing Disease/Rare Disease

DaVita Garfield was a young mother with a great job, a strong faith, and was living a happy life when her health began to fail. She had a number of…

Continue Reading One Amazing Woman, One Amazing Video: See Her Cushing’s Journey
How to Change Your Dystonia Game with DBS
Pixabay

How to Change Your Dystonia Game with DBS

  • Post author:Sabina Kennedy
  • Post published:October 17, 2016
  • Post category:Dystonia/Rare Disease

Playing games with your mind? That's exactly what experts believe you should do to stimulate your brain and stay sharp, no matter how old you are. You might be surprised…

Continue Reading How to Change Your Dystonia Game with DBS
Descubre por qué este mensaje sobre la distonia es tan importante

Descubre por qué este mensaje sobre la distonia es tan importante

  • Post author:Patient Worthy Contributor
  • Post published:October 17, 2016
  • Post category:Dystonia/Rare Disease

  Conozca a Brittany! Brittany estaba desanimado después de ir a un restaurante y tener la camarera ignoran por completo de ella cuando la distonía hace que le sea difícil…

Continue Reading Descubre por qué este mensaje sobre la distonia es tan importante
This Man with Cystic Fibrosis Exercises His Way Out of the Hospital
Source: www.pixabay.com

This Man with Cystic Fibrosis Exercises His Way Out of the Hospital

  • Post author:PW Blogger
  • Post published:October 14, 2016
  • Post category:Cystic Fibrosis/Rare Disease

People mostly know that cystic fibrosis (CF) causes issues with the lungs—to the point of breathing difficulty. Contrary to common assumptions, cystic fibrosis also affects the pancreas, making it difficult…

Continue Reading This Man with Cystic Fibrosis Exercises His Way Out of the Hospital
How a Quiet Video Makes a Big Difference
Source: www.pixabay.com

How a Quiet Video Makes a Big Difference

  • Post author:EmpatheticBadass
  • Post published:October 14, 2016
  • Post category:Ehlers-Danlos Syndrome/Rare Disease

Sometimes a video speaks VOLUMES more than mere words. Maybe that’s why Kaleigh McCormick decided to make a video about her life with Ehlers-Danlos syndrome (EDS). Maybe she made the…

Continue Reading How a Quiet Video Makes a Big Difference
More People Need to Be Like This Little 7-Year-Old
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More People Need to Be Like This Little 7-Year-Old

  • Post author:James Ernest Cassady
  • Post published:October 11, 2016
  • Post category:Dystonia/Rare Disease

Celia Godfrey is awesome; there's just no debate about it. I wish I had her positive attitude. The seven-year-old lives with dystonia, a neurological condition that affects communication between the…

Continue Reading More People Need to Be Like This Little 7-Year-Old
How to Redefine Dystonia Momma’s Way
[Source: pixabay.com]

How to Redefine Dystonia Momma’s Way

  • Post author:Sabina Kennedy
  • Post published:October 10, 2016
  • Post category:Dystonia/Rare Disease

Call me crazy, but I’m pretty sure September was trying to kill me. The whirlwind romance with summer is over. All the front displays of the supercenters showcase the brilliantly…

Continue Reading How to Redefine Dystonia Momma’s Way
How to Protect Those on the Dystonia Front Line
Source: pixabay.com

How to Protect Those on the Dystonia Front Line

  • Post author:Sabina Kennedy
  • Post published:October 7, 2016
  • Post category:Dystonia/Rare Disease

When I was young, my grandfather delivered coal. And when I asked, “How much coal did you deliver today, Papa?” He always replied, “A shit ton!” That was Papa’s favorite unit of measurement.…

Continue Reading How to Protect Those on the Dystonia Front Line
Nolan’s Future Living with Dystonia

Nolan’s Future Living with Dystonia

  • Post author:Rebekah
  • Post published:October 7, 2016
  • Post category:Dystonia/Rare Disease

I want to see my kids grow up. I just want to see them a happy, that’s all. I think that goes with just about any parent; they just wanna…

Continue Reading Nolan’s Future Living with Dystonia
Mom Needs the Truth About Botox and Dystonia
[Source: pixabay.com]

Mom Needs the Truth About Botox and Dystonia

  • Post author:Sabina Kennedy
  • Post published:October 6, 2016
  • Post category:Dystonia/Rare Disease

I am THAT mom. I don’t like or take medicine unless it’s my last resort. And the same goes for giving it to my children. To a fault, I follow…

Continue Reading Mom Needs the Truth About Botox and Dystonia
What is the Unexpected Link Between the Armenian Genocide and FMF?
Source: pixabay.com

What is the Unexpected Link Between the Armenian Genocide and FMF?

  • Post author:Erica Zahn
  • Post published:October 6, 2016
  • Post category:Familial Mediterranean Fever/Rare Disease

Scientists in Armenia are partnering with their scientific counterparts at the University of California in Los Angeles to map the genome of the Armenian people. This is an important step…

Continue Reading What is the Unexpected Link Between the Armenian Genocide and FMF?
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