**One area I would like to point out is the common idea that with EDS there is a high risk of failed surgeries for joint stabilization. This is not entirely accurate and I have had an alternate experience. It is important to find a surgeon who recognizes and understands EDS, makes necessary modifications, and is creative--all of which I am fortunate to have. It is also important to do your own research on what procedures to avoid, and what surgeries have been successful.
EDS: Stages in Life
Here is a great article that documents what to look for when you suspect EDS or another connective tissue disorder and steps for managing as best as possible (click here)
**One area I would like to point out is the common idea that with EDS there is a high risk of failed surgeries for joint stabilization. This is not entirely accurate and I have had an alternate experience. It is important to find a surgeon who recognizes and understands EDS, makes necessary modifications, and is creative--all of which I am fortunate to have. It is also important to do your own research on what procedures to avoid, and what surgeries have been successful.
**One area I would like to point out is the common idea that with EDS there is a high risk of failed surgeries for joint stabilization. This is not entirely accurate and I have had an alternate experience. It is important to find a surgeon who recognizes and understands EDS, makes necessary modifications, and is creative--all of which I am fortunate to have. It is also important to do your own research on what procedures to avoid, and what surgeries have been successful.
My name is Jill and I am 29 years old. I am a former competitive gymnast and I have Ehlers Danlos Syndrome (hEDS), Chiari Malformation- Type 1 (8.5mm herniation), craniocervical instability, Neurocardiogenic Syncope and POTS (forms of Dysautonomia and secondary conditions to EDS), slight/minor Mitral Valve Prolapse, bilateral acetabular hip dysplasia (corrected in a procedure called Periacetabular Osteotomy--PAO), gastroparesis and delayed intestinal motility, Hashimoto's, Graves', Autoimmune Neutropenia, and Complex Regional Pain Syndrome (CRPS).
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