Editor’s Choice: Emotional Support for the Rare Community

Happy Thursday, Readers!

This week we’re highlighting four articles on rare disease and chronic illness patients and ways to provide support that goes beyond treating physical symptoms. First, we have an article on how important it is to provide emotional support for kids who have chronic illness. Next, we have a piece that focuses specifically on how to be there for young adult spoonies. Our third highlighted article discusses the emotional burden patients who aren’t taken seriously face, and our final piece covers a family in the Czech Republic dealing with a disease that was totally unfamiliar to them until their child was diagnosed.
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The Importance of Emotional Support for Children with Chronic Illnesses

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It’s important to treat the physical parts of a disease, but also to understand the emotional effects. [/one_half_last] [one_half]

 

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The Origin of Our Odyssey: Support for Rare Young Adults

 

 

Young adults are already going through major life transitions– and a rare disease diagnosis only makes that harder.
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ICYMI: #PatientsAreNotFaking Because Patients Are Sick, And They Are Sick of Not Being Taken Seriously

 

Often, people with rare diseases are doubted– and this can mean they don’t get the support you need.
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“We Don’t Know Anything:” a Mitochondrial Encephalomyopathy Story From the Czech Republic

 

 

A family in the Czech Republic explains that they don’t know what the future holds– they don’t know anyone who has their child’s diagnosis.
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Do you have a rare disease experience of your own? Share with us here.

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