Synopsis feedback July 2014 Living with EDS For the past three months I couldn’t make up my mind whether to share my story on social media or not… and please just so we clear, THIS IS NOT A PITY POST... don’t pity me (believe me I have more than enough of that going on around me) this post is meant to educate and enlighten… hopefully someone you know won’t have to wait as long as I did to know what’s up with ‘em My nightmare began one fine Sunday afternoon in the hostel sometime in 2005. I went to shower, slipped and fell. Instead of going butt first, I went palm first. Everything after that is still a blur. I do know two things though: 1 I dislocated my right shoulder and 2. I did (I wasn’t sure then) put it back. Everything happened so fast that the only verification I had of my mishap was the awful pain in that shoulder. And for the next 6years I lived in a special kind of hell on earth… Unbeknownst to me, the physical pain I was going through then was much easier than the emotional and psychological pains that were to come. Immediately after my fall, i went to the TH (then it was a specialist hospital) and the doctor I saw didn’t even believe me. He said the only explanation he could come up with, was I had a muscle pull (something I can’t remember)... I was prescribed pain killers and sent home. Even my parents didn’t know what to make of my “illness” but thankfully they did believe something was wrong. I went to almost all the private hospitals in this town but couldn’t get the right diagnosis. I was diagnosed with almost every bone/joint related ailment. From arthritis to gout and others I choose not to remember. Finally after a very very VERY embarrassing episode in school… my parents decided to take me to see a well-known orthopaedic in Kano. His diagnosis: my ligaments are too soft and require an operation to insert some bolts in my joints to keep them steady (?!). My parents refused. We did find another doctor though in Jidda KSA. He diagnosed me with EDS and advised my parents not to go with the operation. His reason; there is no known cure for Eds. Ehlers-Danlos Syndrome (EDS) is an extremely rare genetic disorder that affects the body’s production of collagen. EDS makes every collagen cell in my body faulty and it is programmed to be too stretchy and ultimately becomes like an old stretched out rubber band. Normal rubber bands are tight and when you stretch them they bounce right back to their previous shape. EDS sufferers have collagen that is already over-stretched, so when you stretch it out again, it does not bounce back to its original shape, but stays lax and loose. Therefore, we’re super-flexible. So practically this means that; • Most of the joints in my body are incredibly unstable and hypermobile. I.e. I am prone to dislocations, subluxations and sprains. (at least I put them back myself almost every time) • Incredibly soft skin (that I don’t mind ;-)) that tears easily (this I mind ) • Respiratory problems • Sleep disorders • Risk of a heart disease • Being in incredibly indescribable pain. (things like lifting up my hands with abandon or even unconsciously turning in my sleep are luxuries with awfully painful prices) All that and the many other symptoms I can’t list right now. This disease sure has tested my faith in every way possible. There was even a time before my diagnosis when I was paranoid enough to think God was punishing for all my sins. Not to talk of the folks that believed I had jinn and being the eccentric person I am didn’t help my case either. You won’t believe the many “Malamai” that were recommended to us. It takes a while to wrap your head around all these, but most of all it takes unconditional love from everyone around you to get through it. Honestly I have been blessed with the best of everything… Parents, siblings, family, friends, neighbours. Or how do I explain the type of support I get from them? Alhamdulillah. Finally, I have learnt to live with my weaknesses and shortcomings but the one thing my mind has refused to overcome, STARES. God, I hate it when it happens and people stare. I get the curiosity but the staring still gets to me. Thank you for letting me share my story here.
Posted on: Wed, 30 Jul 2014 23:46:04 +0000
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