Editor’s Choice: Learning Your ABCs and Watching Grey’s Anatomy

Hello Again Patient Worthians!

This week we are highlighting part TWO of a story about a man with cystic fibrosis, racing for his non-profit RaceCF and to spread awareness of exercise therapy for those with CF.

We also have some detox/dieting thoughts on Sjögren’s, the basics of CVID and rare disease on TV!

So sit back and relax! And enjoy another week of Editor’s Choice.

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Manny and his family

 

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Man with Cystic Fibrosis Races to Help Others – Part 2

Manny Goguen is 24 years old, living with CF and President of the NPO RaceCF.

What does RaceCF do for the CF community? Find out here!

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abc's

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The ABCs Of Common Variable Immunodefiency

If your child has been recently diagnosed with CVID, this article is a must-read.

Often times, when supporting those with rare disease, we ask: “What can I do to make it better?” This post will help you get to your answer!

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bite sized vegetables on forks with a white background

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Is A Vegan Diet The Best Way To Fight Sjögren’s Syndrome?

Being a celebrity with rare disease presents a unique chance to educate the population about your neglected condition.

Venus Williams has done just that with Sjögren’s Syndrome. She is on an anti-inflammatory, vegan diet that has yielded positive results. Could this work for others with her disease?

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ga2

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4 Times Grey’s Anatomy Featured Rare Disease and We Loved it

Do you ever watch TV and think “Wow, that’s me! I can totally relate to this situation!”

Well with Grey’s extreme drama, the relatability-factor is pretty low. However, they do feature rare disease a few times, which makes us think they might be more realistic than we once thought!

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