welcome to oneEDSvoice
- a positively charged Ehlers Danlos Syndrome community.- join today!
- login
What a Person With Ehlers-Danlos Syndrome Has to Think About
source: The Mighty
year: 2017
authors: Caroline Brown
summary/abstract: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.
read moreexpertly curated content related to this topic
-
Diagnosis, Natural History, and Management in Vascular Ehlers–Danlos SyndromeVascular Ehlers Danlos syndrome (vEDS) i...
-
Coping with Pain from Ehlers-Danlos SyndromeYou might have seen Hallie’s edition o...
-
Robot Helps Young Girl with Ehlers Danlos Syndrome Experience the Outside WorldA rare genetic disorder often prevents 1...
-
Our Stories of Strength – Living with Ehlers-Danlos SyndromeAn inspirational collection of stories, ...
-
Treatments for POTS That Don’t Require Medicationhttp://myheart.net/wp-content/uploads/20...
-
Ehlers- Danlos Syndrome Network C.A.R.E.S. ResearchThe Value of Medical Research. Why is Eh...
-
Ehlers-Danlos Syndrome: Arthroscopic Management for Extreme Soft-Tissue Hip InstabilityPURPOSE: To present outcomes in a serie...