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Daily Archives: February 8, 2017

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This is What Mental Fatigue From IPF Looks Like
[Source: pixabay.com]

This is What Mental Fatigue From IPF Looks Like

  • Post author:Ronald Ledsen
  • Post published:February 8, 2017
  • Post category:Idiopathic Pulmonary Fibrosis/IPF/Rare Disease

If you’ve ever felt overwhelmed by everything going on in your life—finances, job, family drama (save it for your mama)—you have some idea of what mental fatigue feels like. But…

Continue Reading This is What Mental Fatigue From IPF Looks Like
6 Tips to Survive Lyme Treatment
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6 Tips to Survive Lyme Treatment

  • Post author:Patient Worthy Contributor
  • Post published:February 8, 2017
  • Post category:Lyme Disease

Hopefully, everyone in the Lyme community knows of Yolanda Foster and her family's battle with Lyme. If not her, then perhaps Avril Lavigne. If not her, then maybe they know…

Continue Reading 6 Tips to Survive Lyme Treatment
Disillusioned by Dysautonomia

Disillusioned by Dysautonomia

  • Post author:Patient Worthy Contributor
  • Post published:February 8, 2017
  • Post category:Dysautonomia/POTS/Rare Disease

Recently, my boyfriend and I were looking at places to go on vacation before he gets deployed. He wants to travel internationally because this is his last chance for a…

Continue Reading Disillusioned by Dysautonomia
Looking Back: This Mom’s Video Could Make CVID Awareness Go Viral

Looking Back: This Mom’s Video Could Make CVID Awareness Go Viral

  • Post author:Rebekah
  • Post published:February 8, 2017
  • Post category:CVID/Primary Immunodeficiencies/Rare Disease

We want to celebrate our patient contributors and writers for their efforts in helping the rare community, bringing awareness, understanding and compassion to often neglected disease. The following article was originally…

Continue Reading Looking Back: This Mom’s Video Could Make CVID Awareness Go Viral
Will You Be THE ONE To Save This Woman’s Life?
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Will You Be THE ONE To Save This Woman’s Life?

  • Post author:Erica Zahn
  • Post published:February 8, 2017
  • Post category:Chronic Myelogenous Leukemia/Rare Disease/Timely

With all the political hocus-pocus that's enveloped the United States over the past year, I'm starting to get "petition burn-out," "marcher's burn-out," and just a general "call-to-action burn-out." This is…

Continue Reading Will You Be THE ONE To Save This Woman’s Life?
Morquio Syndrome: How One Inspirational Man Refused to Take “No” for an Answer
[Source: pixabay.com]

Morquio Syndrome: How One Inspirational Man Refused to Take “No” for an Answer

  • Post author:Alisha Stone
  • Post published:February 8, 2017
  • Post category:MPS IV (Morquio syndrome)/Rare Disease

I have a new hero, an Irishman who’s not only gotten some great press and notoriety, this guy has struck gold in the hearts of the Morquio syndrome community! In…

Continue Reading Morquio Syndrome: How One Inspirational Man Refused to Take “No” for an Answer

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Metastatic Breast Cancer: Navigating Grief


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Rethinking What It Means to Live With Acromegaly


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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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