My hEDS was diagnosed February 2020, aged 35 after around 15 years struggling with physical symptoms. Thankfully a formal diagnosis has fundamentally changed my life and I’ve improved my health and wellbeing a lot through lifestyle changes and by learning to better self-manage my comorbidities (including MCAS, autonomic dysfunction and and Median acuate ligament syndrome).
I am currently studying part time for a Masters degree in Clinical and Developmental Neuropsychology which I hope to eventually put to use in some research into the clinical benefits of floatation therapy. Through my degree, I realised that I might be autistic and I received a formal autism diagnosis in May this year. I will be conducting my MSc Research Project around EDS and autism, possibly around issues in sensory input (as this is something I am interested in from the floating literature too).
I now have a personal interest in the diagnostic journey; medically-induced PTSD from the diagnostic journey; communication skills used in healthcare settings; differences in opinions and perspectives of the presenting complaint; the difference a diagnosis makes to someone’s life; stages of chronic illness identity and finally the adaptations a patient makes in learning to self-manage following a correct medical diagnosis. I continue to do what I can in the fields of both patient advocacy and educating medical professionals about complex and rare illnesses.
I’ve completed a few of the EDS ECHO Advocacy courses and have loved attending many of the EDS Society virtual conferences. I am eternally grateful for the level of dedication, compassion and expertise shown by the network of specialists working to improve the lives of patients with EDS & HSD.