Last night I was taken to hospital by ambulance after passing out and being unresponsive due to severe pain levels. Unfortunately once again I was faced with people who had never heard of Ehlers-Danlos Syndrome and didn’t know how to treat me. I was pricked with needles numerous times, even after saying I have a connective tissue disorder and have fragile veins and usually need a more permanent line for IV’s, I was left for hours without pain relief as they didn’t know what to give me after I had a cardiac arrest in November and unfortunately there was not a lot that could be done. I do not blame the medics as they were very busy and the staff were all very kind and wanting to help, but this shows how we need to raise more awareness of Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome and all the other “rare” and invisible conditions out there. We need more specialists locally, not just in London. We need a clear care plan for when things like this do happen. We need help. We need AWARENESS!
I may not look sick on the outside but on the inside there is a different story so I decided to take a picture where I look “well” and write some of the conditions and symptoms I have that are invisible.
Together we can make a difference ♥