Tag Archives: Awareness

Information booklet for JHS/HEDS in kids, part – 2

Last month, I made a brochure (Part 1) aiming to provide information to school teachers about what is JHS/HEDS and how it affects children.The brochure in this post is the second in the series, and offers tips to teachers on how … Continue reading

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Reblog: Losing someone to suicide

… Chronic Illness, whether mental, physical or combined, is an incredibly difficult journey. The uncertainty is terrifying, the tests are invasive, the symptoms are debilitating. It is a burden, it is life changing, it is exhausting, it is lonely, it is … Continue reading

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Reblog: 8 biggest POTS myths

8 Biggest POTS Myths By EMILY CODAY There are a lot of common misconceptions about POTS. There are ones I get from doctors, nurses, family, friends, and even other POTS patients. Remember that most of our POTS symptoms are different and that … Continue reading

Posted in Awareness, Daily Life Challenges/Tips, Dysautonomia, JHS/H-EDS, Recommended Reading | Tagged , , , , , | Leave a comment

Reblog: When to Suspect EDS | Oh TWIST

A very informative and comprehensive article by Jan Groh on her blog Oh Twist. When to suspect EDS

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Rare Disease Day 2016

Today is Rare Disease Day. Rare diseases are defined by most organizations as those diseases that have a low prevalence. While EDS-HT is considered a rare disease, there are many recent studies that suggest a higher prevalence of this condition and … Continue reading

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