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Daily Archives: January 2, 2017

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What to Do When Your Baby Has a Urea Cycle Disorder
[Source: pixabay.com]

What to Do When Your Baby Has a Urea Cycle Disorder

  • Post author:Ronald Ledsen
  • Post published:January 2, 2017
  • Post category:Rare Disease/Urea cycle disorders

Ammonia. Even if you don’t know much about it, you know it’s great for cleaning but not so great for ingesting. You… you do know not to ingest it, right?…

Continue Reading What to Do When Your Baby Has a Urea Cycle Disorder
My Agonizing and Expensive Rare Disease Diagnosis – Part 1

My Agonizing and Expensive Rare Disease Diagnosis – Part 1

  • Post author:Patient Worthy Contributor
  • Post published:January 2, 2017
  • Post category:HAE

When I was 20 years old, my new husband and I celebrated our marriage with family and friends, with a luncheon where there was no alcohol. Neither of us drank…

Continue Reading My Agonizing and Expensive Rare Disease Diagnosis – Part 1
A New Year for the Impossible

A New Year for the Impossible

  • Post author:Kristen Lord
  • Post published:January 2, 2017
  • Post category:Rare Disease

Sometimes, the only things you can do are what is necessary in life-- the things that are possible. Keep doing just that and soon you may find that you can do…

Continue Reading A New Year for the Impossible
Why I Stopped Taking My Medications (and How You Can Too)
Pexels / Pixabay

Why I Stopped Taking My Medications (and How You Can Too)

  • Post author:Patient Worthy Contributor
  • Post published:January 2, 2017
  • Post category:Myasthenia Gravis/Rare Disease

Have you ever counted how many pills you take in a day? I have and the answer is way too many. Like the other 50 million Americans today, I have…

Continue Reading Why I Stopped Taking My Medications (and How You Can Too)
A CF Love Story That Will Make You Weep
Source: pixabay.com

A CF Love Story That Will Make You Weep

  • Post author:PW Blogger
  • Post published:January 2, 2017
  • Post category:Cystic Fibrosis/Rare Disease

The word Love. What does that mean to you? Most people say: "Well holding hands, kissing, and spending lots of time together." Love is a strong word. I feel if you…

Continue Reading A CF Love Story That Will Make You Weep
Si alguna vez has querído dejar de fumar, este graduado con FCAS tiene algo que decirte

Si alguna vez has querído dejar de fumar, este graduado con FCAS tiene algo que decirte

  • Post author:Patient Worthy Contributor
  • Post published:January 2, 2017
  • Post category:CAPS/FCAS/Rare Disease

Aaron es un graduado de la universidad de veinte-cuatro años de edad que viven en Alabama. Él es un empresario que se especializó en gestión de pequeñas empresas. Su padre…

Continue Reading Si alguna vez has querído dejar de fumar, este graduado con FCAS tiene algo que decirte

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