Editor’s Choice: CRPS Life, Diagnosis Grief, and Cancer Wars

Happy Friday Patient Worthians!

This week we have two awesome contributions. One addresses grieving as a parent of a child with rare disease. Another addresses living with CRPS and other rare diseases while in high school.

We also have an incredibly inspiring interview with an 11-year mesothelioma survivor. Lastly, we have details on an upcoming Cystinosis Research Network event!

We hope you are as excited as we are to check out this week’s Editor’s Choice!




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On the Day of Diagnosis, the Grieving Begins

PW Contributor Denise is a rare mom with a child battling chronic illness.

Read her experience here.

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How I Am Still Breathing

PW Contributor Karen is in high school. As if this environment isn’t harsh enough, she’s battling multiple rare disorders.

Check out her journey here.

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139 Months and Counting: How Heather Outlasted her Mesothelioma Prognosis and Found her Advocacy Voice

We had the pleasure of talking to Heather about her advocacy work for mesothelioma.

Read about her rare disease journey and how she is giving back.

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The 2017 Cystinosis Research Network Family Conference is Coming Soon!

Mark your calendars for this cystinosis event you won’t want to miss!

Check out the details here.

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