My story – Shannon
I was diagnosed with Ehlers Danlos Syndrome after my third patella dislocation, and the idea I wasn’t just double jointed came from my 17 year older sister who at the time had just finished healing from an operation on her knee to stop her patella dislocations. That operation left her with many complications, a knee that still dislocates and an appointment with the specialist to get a diagnosis of EDS. This of course was something we needed to see if I had because if I did then there was no point to seeing what operations may help me, so my whole family got sent to the specialist and both me and my mother got diagnosed with EDS and an appointment with a cardiologist to make sure our hearts were fine. Finding out there wasn’t an operation that could magically fix my dislocations was hard for me to stomach especially since I was 12 at the time, but it did push me and my family into looking at alternative options like Hemp Balms for pain or buying a boots brand knee brace for support when doing physical activities. The hospital did assign me a term of hydrotherapy which did help strengthen my mussels so I continued swimming after I was done and I tried to continue on with sports that I loved. Unfortunately as I got older I had more patella dislocations from roller-skating, trampolining and playing football and I decided that for me it was best to quit contact sports and stick to swimming as the reward wasn’t worth the risk of more time on crutches and pain. Knowing that my trouble with walking long distance was causing me pain and frustration my mum bought a self propelling wheelchair for me which was amazing, having a wheelchair was helpful as I could go with my family on long walks around festivals and town without being in agony. The wheelchair gave me a lot of independence which was a great feeling for me as I didn’t need my mum to push me everywhere, however I started feeling a lot of pain in my hands and wrists from moving myself everywhere and I was needing my mum or dad to push me at lot more. Those side effects kind of defeated the purpose of buying the wheelchair, which was to give me independence and stop my pain. So we looked into other methods of transport and we came across renting a mobility scooter, any time we were going to the Zoo or long trips we rented a scooter. After a while we realised that renting a scooter was costing us a lot of money and it would be more cost effective to buy a scooter, and I took that thing everywhere I took my wheelchair and used it to save myself pain from walking on crutches. Around two years ago my other knee finally gave out and I had my first patella dislocation with that knee and I ended up needing to go to orthopaedics to have new braces fitted to both legs, my doctor was great she knew exactly what EDS was and why I needed braces and she spent so much time searching for the best braces to prevent patella dislocations. The time I met her after measuring my legs she had my braces ready where she showed me how to wear them and she explained that these blockers on each side of the brace which was to block my patella’s from moving to the outside of my leg and these braces worked great. Currently I’m now back to the orthopaedics to get another set of braces because these wear out in two years and I’ve recently had a dislocation with them on so they have defiantly reached the end of their use, I’m excited to see my new braces and start wearing them in.
I don’t have a lot of tips for thriving in college but I do know there was one thing that has helped me learn my course and stay on top of assignments and that’s being really honest with my tutors. In college I do a lot of work remotely due to pain and energy levels and my college is completely fine with this because I was really honest letting them know what my EDS effected and what can realistically happen to prevent me from attending my classes. On bad pain days or low energy days I don’t go into college, I instead let my teachers know I will be working remotely and that I will send my finished work in once I feel better. I can complete my work any time of that day and as long as I send proof of my work and my tutors wont mark me absent. I’m sure it helps that I picked a digital multimedia course so we work with computers and not something really physical like carpentry or mechanics.
Some overall tips that have helped me with my EDS is having a pill table in my notes app I have all of my medication listed out in this note and anytime I take something I mark the time I take that medication, this helps me know when I can take another does of pain relief and prevents me from accidently double dosing. Another tip I have is having a list of your favourite easy to make meals or some easy meals in the house for low energy days like microwave meals or instant noodles, I have these in because when I have low energy if I cant decide what I wasn’t to eat I just get frustrated and wont eat.