About Us Blog All it takes is for one person to listen Most of the time we go to the doctors feeling ill and we leave with a solution. Sometimes this is treatment, advice, tests, but at least we have a direction to go. With other conditions, the life-long ones, this can take longer. In my case, my diagnosis of Ehlers Danlos Syndrome (EDS) took thirteen years (EDS is a group of connective tissue disorders caused by different genetic defects in collagen). My first dislocation was when I was thirteen years old and is one of the main symptoms of EDS. This happened at school after stepping down one step. After physio I was told exercise was the best way to keep the muscles around my knee strong, so I did all the exercise I could. I’m not sure if it helped, but I didn’t really have any more issues until my late teens. I had moved out in to my first flat and once again I slipped down one step (stairs seem to be my downfall) and put my arm out to break my fall. This time my shoulder dislocated, and the hospital thought I had broken my collar bone. By this time, I had also starting suffering with other symptoms. The issue with EDS is the symptoms are quite sporadic, so a health professional looks at them all as separate problems. The new one was my back, it would spasm out of control and the pain was unbearable. My shoulders and my knees were dislocating daily, and the constant acid reflux meant I lived with nausea. I also ended up having my gallbladder out after developing gall stones but the pain in my stomach continued even after the surgery. The answer at that point was to put me on opioids and send me to the pain clinic. In my early 20s I was married and we wanted children. After 7 miscarriages, another symptom was added to my list, but every doctor still looked at everything separately. I had started getting numbness in my fingertips, toes, and decreased sensation in my legs. I was once hospitalised as I lost feeling in my legs completely for 6 hours and was told ‘it must be something to do with your back issue.’ I had no answers, and my daily life was getting harder and harder to manage. The time I gave up on ever finding out what was wrong with me was one day when I was on my way to the pain clinic. I dislocated my knee at the train station and relocated it myself. After the number of times it had happened, it was now second nature (but please don’t try that yourself). The staff at the station called an ambulance and I was taken to A&E. I tried to explain that this was normal for me, but I think they wanted to ensure no damage had been done. I reluctantly agreed to go. By this time, I had been to A&E over thirty times for dislocations, miscarriages, gall bladder attacks and back issues. I dreaded going there, but there was always hope that someone would have an epiphany of what was wrong. Instead, this time they sent in a psychiatrist. I sat there whilst they told me that I was attention seeking, faking it and needed help. I did need help, medical help, and yes, I had anxiety and suffered with panic attacks, but anyone going through this would. I left feeling devastated and it got to the point where I started believing that maybe this was all in my head. No doctor could find anything so maybe there was nothing to find. For years I struggled through the dislocations, pain, numbness, and every other symptom EDS threw at me without knowing why I was like this. I was scared to seek further help because of that one psychiatrist. Then in 2015 my GP left my surgery, and I was taken over by someone new. I went to see him one day for a review of my medication. He asked me why I was on this much medication and said he wanted to look at my case fresh. I was there about half an hour and by the end of the visit I finally felt like someone had listened to everything I had said. He asked me if I had heard of EDS. I hadn’t, I had no idea what it was. I went home and looked it up, and it was like reading about me even down to the small symptoms! Thanks to that doctor I finally got my diagnosis of EDS. Things may not get better for me, but at least I know why I am the way that I am. I was born like this and even though I didn’t know I had symptoms until I was thirteen years old, there are things in my medical history as a child that now make much more sense. All it takes is for one person to listen and understand, and for me it was that doctor. That GP changed my life, and I will be forever grateful. I suppose what I am saying is, never give up.