Updated: Jun 3, 2019
[#ImageDescription a photo of Charlie a white women in her twnenties with shoulder length brown hair, the photo is in greyscale with a slight vignette. She is standing aginast a white wall holding the palms of her hands up. On the left hand in black ink it reads "5 years of serious illness". The right hand has a tattoo on the wrist reading 'abc' written on the palm of the hand in black ink are the words "26 years of signs & symptoms"]
May was EDS Awareness Month. I have taken a day off the EDS Challenge to share my #TimetoDiagnosis contribution. EDS UK have been running a social media campaign called #TimeToDiagnosis in which people with EDS share the time it took from their first GP appointment with symptoms until their EDS diagnosis.
For me, this number is tricky as I had signs and symptoms and health issues from birth, along with signs and symptoms my brothers also exhibited as young children. Issues that if they had all been connected together by a GP with the kind of information laid out in the EDS toolkit (a guide for GP's on EDS) I could of been diagnosed very early and appropriate management may have prevented some of my more life-threatening issues.
So time to diagnosis for me is 26 years of signs & symptoms. And 5 years of serious illness in which I was unable to hold down a job, lived mostly in begged and saw doctors on a weekly basis, begging for help.
[#ImageDescription The image on the left is of a white hand held up against a cream background and on the palm in black ink it reads "5 years of serious illness". The image on the right is a photo of a white hand with a tattoo on the wrist reading 'abc' written on the palm of the hand in black ink are the words "26 years of signs & symptoms".]