I was diagnosed with hypermobile Ehlers-Danlos syndrome (EDS) at twenty-four years old, having been symptomatic since thirteen years of age when I was pushed off a chair at school. My daily symptoms are widespread pain, subluxing and dislocating of all my joints, my neck, my pelvis and my coccyx/sacrum area being the worst, alongside brain fog (fatigue of the brain) and gastrointestinal-digestive issues.
I spend my time researching and discovering new developments in medical treatments and studying for a Psychotherapy career. I struggle with daily living apart from the knowledge and experience I have gained over the years to be able to survive independently, but not live. I am soon to turn twenty-eight years old and am now questioning the diagnosis and find more links with arthrochalasia EDS (aEDS) than my original diagnosis of hEDS, but yet to have molecular testing to confirm this. I currently do not have the medications to help relieve the pain I experience daily, but still hold hope that one day I will.
I am grateful to the friends and family that have and continue to support me, although at times I can pose a challenge through negative behaviours that are associated with pain and heightened stress levels. I will not give up searching for an answer and hope with the support of The Ehlers-Danlos Society and SEDS Connective that one day this will be possible.
