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What a Person With Ehlers-Danlos Syndrome Has to Think About

key information

source: The Mighty

year: 2017

authors: Caroline Brown


What does living with EDS look like? Medicine for all kinds of pain, migraines, nausea. Knee, ankle, finger braces and back up braces in my book bag and car. Compression socks and essential oils. Books and handouts for relearning how my joints work. All kinds of physical and occupational therapy tools to work with.

What is living with EDS like? Ehlers-Danlos comes with multi-systemic symptoms so it’s never just one thing I have to think about. It’s about “saving my spoons” so I have enough energy to get through the day. Always being conscious of where my joints are, if I’m hyperextending them and correcting my posture so I can try to prevent further tissue damage. Having to keep up with all seven of my different doctors and their appointments.

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