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Daily Archives: November 17, 2017

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Editor’s Choice: An Easy Way to Share Your Holiday Cheer

Editor’s Choice: An Easy Way to Share Your Holiday Cheer

  • Post author:Patient Worthy Contributor
  • Post published:November 17, 2017
  • Post category:Rare Disease

Happy Friday Before Thanksgiving! As you prep your tummies for the feast next week, take a dive into some of our top stories this week. There is an article honoring…

Continue Reading Editor’s Choice: An Easy Way to Share Your Holiday Cheer
The Bittersweet Story Behind Jackson’s Honest Chips
Source: Pixabay

The Bittersweet Story Behind Jackson’s Honest Chips

  • Post author:Patient Worthy Contributor
  • Post published:November 17, 2017
  • Post category:Aicardi-Goutieres Syndrome/Rare Disease

Everyone with dietary restrictions knows the struggle of going to the grocery store, scanning the nutrition, and sighing when it doesn't quite meet the requirements you need. That exasperation, looking…

Continue Reading The Bittersweet Story Behind Jackson’s Honest Chips
Hairs Everything You Need to Know About Hair Donation
[Source: pixabay.com]

Hairs Everything You Need to Know About Hair Donation

  • Post author:Chloe Easterbrook
  • Post published:November 17, 2017
  • Post category:Ovarian Cancer/Rare Disease

Looking different as a kid (or adult) can have a serious impact on your self-esteem, particularly if you’re dealing with something that also affects your health. Hair loss due to…

Continue Reading Hairs Everything You Need to Know About Hair Donation
Get Tested for Zika Not Once, But Twice
Source: Pixabay

Get Tested for Zika Not Once, But Twice

  • Post author:Andres Rovira
  • Post published:November 17, 2017
  • Post category:Microcephaly

According to a new study, getting tested for Zika once is not enough. A second procedure may be needed to avoid giving birth to a child with defects. We all…

Continue Reading Get Tested for Zika Not Once, But Twice
How ALS Patient Trapped without Power in Puerto Rico Survived

How ALS Patient Trapped without Power in Puerto Rico Survived

  • Post author:Patient Worthy Contributor
  • Post published:November 17, 2017
  • Post category:Amyotrophic Lateral Sclerosis/Rare Disease

You've heard about Hurricane Irma and Maria that hit Puerto Rico, destroying schools, hospitals, and leaving the island without power. You've seen the devastating photos. Millions of people living there…

Continue Reading How ALS Patient Trapped without Power in Puerto Rico Survived
What to Expect When You Have Scleroderma
Source: Pixabay

What to Expect When You Have Scleroderma

  • Post author:Ellen Johnson
  • Post published:November 17, 2017
  • Post category:Rare Disease/Systemic Scleroderma

Scleroderma, which is chronic hardening and tightening of the skin and connective tissues, can have a huge influence on the body, both mentally and physically. According to Andrea Peixoto, in…

Continue Reading What to Expect When You Have Scleroderma
If Your Life Expectancy Doubled, What Would You Do With That Time?
Source: Pixabay

If Your Life Expectancy Doubled, What Would You Do With That Time?

  • Post author:Patient Worthy Contributor
  • Post published:November 17, 2017
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

If you're a fan of indie documentaries and contemplating the purpose of life, you'll probably like Gabe. Long before the filming began, Gabe Weil's story started in St Louis. He…

Continue Reading If Your Life Expectancy Doubled, What Would You Do With That Time?
A Novel About Recovering from Guillain Barre and Saying “Yes” to the Mom-cation
source: pixabay.com

A Novel About Recovering from Guillain Barre and Saying “Yes” to the Mom-cation

  • Post author:Patient Worthy Contributor
  • Post published:November 17, 2017
  • Post category:Guillain Barré syndrome

Four years ago, Meli Dez and Jules Morse came back from their "mom-cation" to Montreal changed. Both women were mothers of young children, and suddenly they were exposed to a…

Continue Reading A Novel About Recovering from Guillain Barre and Saying “Yes” to the Mom-cation

Featured


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Metastatic Breast Cancer: Navigating Grief


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Rethinking What It Means to Live With Acromegaly


Illustration of mentor program members


The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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