EDS is a hereditary condition that affects the connective tissue - basically the glue of the body so it affects the joints, organs, skin, ligaments - pretty much everything. There are 13 different types of EDS each have a different characteristics as well as a genetic marker apart from hypermobile EDS which researchers are still looking the genetic marker for. I had genetic testing as it was originally suspected that I may have vascular EDS but that came back negative so I was diagnosed with hypermobile EDS (hEDS) but I still have some features of vEDS.
Zebras represent the condition as EDS is classed as a rare illness. The reason behind the zebra is because doctors are taught “when you hear hoof beats think horses not zebras” meaning look for the most common cause first but of course like zebras rare things exist too.
Fact: did you know a group of zebras are called a dazzle!
It often takes those with the condition many years to get a diagnosis. Once I was diagnosed I could see all the signs of my EDS being there in my life way back to childhood when my hypermobility made me a great ballet dancer but I had to give up dancing because of my hyperlordosis (an acute inward curvature of the lower spine) which I now see was a sign of my EDS back them. As well as how all my complaints of joint pain were put down to just simple ‘growing pain’ and other little signs and symptoms of my EDS being there all along. I think now though however EDS is getting a little more recognition so hopefully my collective missed opportunities wouldn’t happen again today if I had seen at least one professional who knew about EDS.
My skin is alsomore fragile so I’m more susceptible to injury so I’m always covered in marks and bruises. Activity in terms of movements have to be done carefully due to the high risk of injury including causing a joint to sublux (partly dislocate) or dislocate. EDS also affects the organs; for me it’s left me in bladder failure so I have a surgically placed catheter, which has greatly improved my quality of life even though it is difficult having a catheter to manage. EDS also affects my heart and gastrointestinal system (which can develop into secondary conditions). Another co-morbidity/symptom of EDS is dysautonomia which can lead to developing conditions like POTS - Postural Orthostatic Tachycardia Syndrome (this is also linked to my M.E. too).
To brace or not to brace is the question. Braces can be useful but the joint can get reliant and lose ability if a brace is over used. Generally it’s what’s been prescribed. For me I generally wear my splints and braces post dislocation or if a joint is feeling a bit unstable and in need of support, especially my thumb so my most commonly worn brace is my CMC thumb brace. Some parts of the body are harder or impossible to brace; you can get tape but it’s something I’ve not tried. My shoulders are the worst for this as they frequently dislocate/sublux but you can’t brace a shoulder and wearing a sling isn’t practical.
Living with EDS can be really difficult, and tricky. It takes careful management to pace your day to help reduce fatigue and pain. Aids/gadgets help to make life easier. According to my best friend I’m the gadget queen! I find aids so helpful from hands free can openers, adapted knives and scissors, perching stool, PopSockets and phone holders to body pillows (and everything in between) which all help to reduce dislocations/subluxations, make things easier to handle or reduce fatigue, reduce aches and more. I also find other equipment helps me too like my profiling bed, and because my EDS makes me more susceptible to pressure sores I have an airflow mattress; I also have a bath lift. Learning to pace is important too. I also find staying mobile helps even if it is difficult but at the same time accepting and embracing the use of mobility aids I use both crutches or a wheelchair - these help me immensely; I can only manage short distances and weight bearing with my EDS causes me a lot of pain especially in my hips so mobility aids help a lot.
Pain is a big aspect of having EDS. The pain covers your whole body; you get the muscular-skeletal pain but then I also have my bladder pain and my gastrointestinal pain too. The pain can feel pretty relentless; there are no days off from it. Some days are better than others but it’s always there. Meds and other things help, I’ve tried lots of things, some things help better than others. Mindfulness, heat, distraction, movement, massage, TENS machines/pens. I also find that my symptoms like my pain have a domino effect upon my other illnesses and they bounce off one another. Like if my hip pain is bad my M.E. leg pain might flare up. Pain relief medication only does so much too; like in the name it only gives you relief and takes the edge off the pain but it doesn’t take it away it just makes the pain just about tolerable and manageable so I can just about function and have some sort of quality of life.
I wish my EDS had been pick up sooner when I was a child. It’s slowly getting more recognition but more is needed. It often depends upon where you live, locally very few professional's here know much about EDS but in London where my care is so much more is known about the condition. Hopefully as more research is done more is understood about EDS and therefore treatments and the diagnosing of EDS will improve.