Dallas, Texas will Light Up Its Tallest Skyscraper in Support for Dysautonomia Awareness Month
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Dallas, Texas will Light Up Its Tallest Skyscraper in Support for Dysautonomia Awareness Month

The Bank of America building in Dallas, Texas will light itself up in turquoise on Saturday October 28th to show support for Dysautonomia Awareness Month. Everything's bigger in Texas, including…

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Editor’s Choice: Sickle Cell Score and World PI Week Pets

Happy Friday Patient Worthians! Did you know it was World PI Week this week? We have a post on the role pets have with PI. We also have a story on a…

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You’re Not Alone in the Tough EDS Diagnosis World
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You’re Not Alone in the Tough EDS Diagnosis World

Anger. Who doesn’t get angry? From big to small stressors in life, there are far far far too many triggers to choose from that can set us off. But, what…

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Familial Dysautonomia Caregiver Shocks the Inclusion Debate
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Familial Dysautonomia Caregiver Shocks the Inclusion Debate

My girlfriend called me the other day—crying hysterically. I couldn’t understand her much, but it didn’t matter. I know she’s raising her first-born child with familial dysautonomia (FD). Problems related to…

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Editor’s Choice: Overcoming Obstacles and Fulfilling Dreams with Rare Disease

Happy Friday Patient Worthians! PW Contributor Tom Seaman talks about what it's like to overcome the mental toll of your rare disease diagnosis. Another PW Contributor suffering from TN, dysautonomia and…

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Bitten by a Tick at 10: Her Years-Long Battle with Lyme Disease
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Bitten by a Tick at 10: Her Years-Long Battle with Lyme Disease

The tick bit Margie when she was 10, marking the start of a battle with Lyme disease, a battle that continues to this day, into Margie’s 50s. Hers is a story…

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Get Ready for the 5th Annual Dysautonomia International Conference!
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Get Ready for the 5th Annual Dysautonomia International Conference!

Have you ever felt woozy when you stood up? And maybe it was so bad you actually fainted. One possibility is you have a form of dysautonomia called postural orthostatic…

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Editor’s Choice: Suddenly Sleepy and Beautifully Broken

Welcome back to Editor's Choice! This week we have an interesting take on Parkinson's treatment. We also have an empowering article from one of PW's rare disease contributors. We are all feeling the…

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The Uncertainties of the Affordable Care Act and Your Rare Disease Coverage
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The Uncertainties of the Affordable Care Act and Your Rare Disease Coverage

With the new administration, questions of coverage, the ACA and how it effects those of us affected by rare disease have been causing major concern. Today at the 2017 Legislative…

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Esta mamá honesta no quiere que usted para avergonzarse de su enfermedad rara

Kathryn es una esposa y madre de dos niños increíbles. Ella vive con síndrome de fiebre periódica idiopática indiferenciada, urticaria inducida por el frío y síndrome de taquicardia postural (POTS).…

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