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SEDc (My type of dwarfism)

October 3, 2015

October is Dwarfism Awareness Month! Lets start out with what type of dwarfism I have. I have a very rare form of dwarfism called Spondyloepiphyseal Dysplasia Congenital (SEDc)… I know I know, it’s a lllooonnngggg name, but don’t let it scare you! SEDc occurs in less than 1 in 100,000 births. It occurs equally in males and females. People with SEDc can have a number of musculoskeletal problems including an unstable neck, loose ligaments, poor muscle tone, back and spine issues, hip deformities, foot issues and degenerative joint disease in the hips, knees or shoulders. These are just a few of the medical facts about SEDc. To put into “simple terms” my dwarfism causes pain in my joints, and on rainy days such as today… I like to stay in ;) . haha! But regardless of the pain, I make everyday the best it can possibly be!!

 

Because of my dwarfism I have had over 10 surgeries, most of them reconstructive orthopedic surgery done on my hips, ankles and neck. Thankfully that is all I have had so far, but I know of other little people that have overcome over 30 surgeries during their childhood. Most of the time childhood is tough for someone with dwarfism, because they spend a lot of time in and out of hospitals, have many surgeries and struggle for a social life. 

 

I know this seems like a lot, but believe it or not this is something that most little people deal with. Having surgery and making continuous doctor visits is a “norm”, so to speak, and is the best way to ensure that someone like me can live happily and as comfortably as possible. (THANK GOD FOR THE MEDICAL ADVANCEMENTS THEY HAVE NOW) In all my years of surgery recovery going through such hurdles has taught me this… the power of resiliency and a positive attitude can get you anywhere. These two things I hold true to any situation that is put in front of me, because it has always been resiliency and a positive attitude that has helped me in my most down and lonely times.

 

Maybe going through such hurdles is why most people always tell us “wow... you’re so inspiring!” … and heck!  Maybe we are, after all that we go through! But you know… this is the life that has been given to us. Just like any one else, we have our struggles and triumphs... but perhaps ours are a bit different from most people. I know I can speak for myself when I say I wouldn’t want to be any different than how I am. I love this life because it is the ONLY life I know! Surgeries and all ... I am who I am and I’d never want to change it one bit!! 

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© 2019 by Sofiya Cheyenne.