So, hello and welcome to my blog. My name is Emily (obviously, it's in the title) and I have Ehlers- Danlos Syndrome. (Again, obvious...) I'm 21 years old, I'm a second year university student, studying Human Biosciences, and I work in care. I am an ex dancer, I did Ballet, Tap and Modern from the age of 3 until I was 19, when EDS finally stopped me.
I was diagnosed with EDS January 2016, but truly, I have been suffering many different symptoms for as long as I can remember. I have distinct memories of being taken to the doctor by my Mum as I was complaining of lower back pain when I was around 7, and attending physio. Said back pain has only got worse with time. The next indication something was wrong was when I subluxed my left knee for the very first time on my 14th birthday. Great present, right?! It was so swollen, the hospital didn't actually have a clue what I had done, and I was told to come back and see the consultants at the hospital some weeks later. I did so, where they told me not only had I subluxed the knee, I had also chipped a bit of bone off the back of my kneecap. I was shocked, to say the least. I didn't even really know what "subluxed" meant: I damn well do now, sadly. I was sent for physio after that, and the physio noticed I am almost completely flat footed. She referred me to podiatry, and after a LOT of arguing over types of insoles, I finally got foam ones that are a mould of my feet and are made specially for me. My left knee got worse and worse, until I was scheduled for a lateral release the Febuary after the inital subluxion in the previous June. Things improved for a while, it stopped subluxing as frequently. I got on with my life, as I was coming up to my final GCSE exams and needed to focus at school.
I left school, and began to attend sixth form. My left knee still subluxed periodically, but it was something I had grown used to. In the Febuary of 2012, I was in a Ballet lesson, and I stepped back on my right leg with it turned out and bent, and the next thing I knew I was on the floor, screaming in agony. My Ballet teacher was horrified, given she'd seen it happen time and time again with my left knee, and she was devestated for me that it was happening again to the other knee. It took another year or so, and I had a lateral release on the right knee. Improvement was not as good, I was back to subluxing frequently within months this time. Again, I grew used to this. The first subluxion after the surgery on my right knee was in my very first dance lesson back post op. This is what made me sit up and realise it was time to stop, as I was just doing nothing but damaging myself. I miss it terribly, but I had to think about my health.
I had another lateral release on my left knee this year in July, but it's failed entirely, my knee is tracking worse than it did before the surgery, and I have been referred onto another specialist at a different hospital, who I am going to be discussing knee reconstruction as I have troclear dysplasia, which is an abnormality in which the groove that the knee is supposed to sit in has not developed, which will undoubtedly be contributing to my recurrent subluxions. I will miss my old consultants at Blackpool Victoria, after all, I spent 7 years of my life being treated by them and they were good to me, as they did what they could with the knowledge they had.
So that's where I'm at now, my appointment with the new consultants is in three weeks and I am both nervous and in a strange way, excited. It's a good feeling to think I may finally get the help and surgery I need to assist me in living a normal life. I am hopeful, for now.