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Daily Archives: January 19, 2016

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¿Que es AEH? Explicado en 5 fotografías

¿Que es AEH? Explicado en 5 fotografías

  • Post author:Patient Worthy Contributor
  • Post published:January 19, 2016
  • Post category:HAE/Rare Disease

El angioedema hereditario puede ser una enfermedad rara que califica para el estatus de medicamento "huérfano", pero estamos lejos de estar solo. Hay organizaciones de AEH y las instalaciones de…

Continue Reading ¿Que es AEH? Explicado en 5 fotografías
4 Pictures to Sum Up Life with a Rare Disease

4 Pictures to Sum Up Life with a Rare Disease

  • Post author:Rebekah
  • Post published:January 19, 2016
  • Post category:Rare Disease

You can read all the books, write all the articles, and study all the patients, but one thing will always separate someone without a rare disease from someone with a…

Continue Reading 4 Pictures to Sum Up Life with a Rare Disease
How to Manage POTS When Medicine Isn’t Doing the Trick

How to Manage POTS When Medicine Isn’t Doing the Trick

  • Post author:Patient Worthy Contributor
  • Post published:January 19, 2016
  • Post category:Dysautonomia/POTS

When it comes to the different types of dysautonomia, there are often prescriptions doctors try (like Midodrine) to relieve some of the symptoms. But for me, the side effects outweighed the…

Continue Reading How to Manage POTS When Medicine Isn’t Doing the Trick
Doctor, Doctor, Give Me the Herb

Doctor, Doctor, Give Me the Herb

  • Post author:James Ernest Cassady
  • Post published:January 19, 2016
  • Post category:Rare Disease

Depending on the intricacies of our personal health challenges, some of us may be motivated to take actions that others would find unreasonable. For example, I once met a man…

Continue Reading Doctor, Doctor, Give Me the Herb
5 Ways to Live Life Better From a Girl Fighting for Hers

5 Ways to Live Life Better From a Girl Fighting for Hers

  • Post author:Winnie Nash
  • Post published:January 19, 2016
  • Post category:CAPS/Neonatal onset multisystem inflammatory disease/Rare Disease

When Ashley Owen was a year and a half old, her family received news that would forever change their lives. As described through her silent but powerful Youtube video, Ashley…

Continue Reading 5 Ways to Live Life Better From a Girl Fighting for Hers
This Mom’s Narcolepsy Story Will Make You Hold Your Tongue
source: pixabay.com

This Mom’s Narcolepsy Story Will Make You Hold Your Tongue

  • Post author:EmpatheticBadass
  • Post published:January 19, 2016
  • Post category:Narcolepsy/Rare Disease

In the "Don't judge; you never know what someone's going through" department.... Oh. My. GAWD! This woman is awesome! Growing up, this young woman blogger, whom we'll call Ezzie, was…

Continue Reading This Mom’s Narcolepsy Story Will Make You Hold Your Tongue

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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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