Discussions By Condition: Medical Stories

My sad life!);

Posted In: Medical Stories 2 Replies
  • Posted By: Anonymous
  • July 20, 2013
  • 02:08 PM

Im a New Zealander, that was born with two rare diseases cutis laxa and ehlers danlos syndrome. Apparently when I was born doctors said I wouldn't make to the age of 1, then I turned 1, then they changed age prediction that i'd make it to, they said I wouldn't get to the age of 5, well what do you know celebrated my 5th bday, then doctor said im one of the lucky ones(but then there was a doubt that he had) he told my parents that it may or may not be possible that my life will last for much longer(he told them I wouldn't make it to age 13) and well today i'm 18 years of age/: my life has been a struggle with my illness, im going through a depression phase at the moment, I don't go anywhere or do anything, im antisocial, droppd out of high school because of bullying, cant bare going anywhere because im tierd of people staring, pointing as if ima freak. Yes I do look different, but no im not any type of alien, I have two arms, 10 fingers, two legs, 10 toes, a head with two eyes, 1 nose, 1 mouth, two ears..etc.. im just a human that was unlucky with a ugly skin disorder. Although my mind and brain seems to work just fine hehe, I can talk, walk, read, good at math, love science, art and dance(I can do everything that a healthy human can do) but it's my outside image that stops me from socialising. THIS IS MY CRY FOR HELP! people tell me, im blessd, there was a reason why God made me the way I am, but yeah I can only believe that for so long. I've always been shy though, but I have a great family, and few great friends that have supported me through hard times. I've had suicide attemps before; I have two sisters, one brother(all Healthy) I do envy my sisters because they're pretty and they have a social life that i'd love to have but cant, because people are so judgemental, being bullied has affected mentally. what I want out of this message is to RAISE AWARENESS ABOUT MY CONDITION! we do look different but(apart from identical twins) who the heck has exact same features of anybody? ALSO IF ANYONE AT ALL COULD FIND A CURE FOR MY CONDITION PLEASE GET BACK TO ME! I've tried throughout my whole life to just cope with who I am, but I cant sit back an watch others have a normal life. if it's possible for surgery to be done on me, well i'll take my chances with that..and well im gonna stop there lol i'll be sitting for years just talking about my health issues hehe.. Peace!xo

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2 Replies:

  • Greetings, JDEE. Apparently not enough people have your diseases to make them important to the medical industry. I'm aware that both diseases cause loose, sagging, elastic skin (and aged appearance) but I've never know anyone with either disease. I'm eager to hear what time of treatments your doctors have tried. I'm in the opinion that all diseases can be cured. Humans cannot help but stare - it's natural for the eye to be drawn to something that seems out of whack until the brain can make sense of it. Plus some people are just drones. When I see something unusual about a person, I'n always wondering how it can be fixed. After all, we've proven we can regrow fingers and toes, grow organs from stem cell tissue, cure cancers and HIV.Keep making your story known. Some doctor somewhere is working on a treatment or cure that will work! And life is what you make of it. Embrace life and wring out all of the fun, joy and happiness. Do this without the crutch of drugs or alcohol. Need a start? Read jokes and tell them to others. If you can kayak and hike, do it. Don't wait for life to show up on your doorstep.
    Papaya 1 Replies Flag this Response
  • I'm so glad Papaya replied to you with wise words. I wouldn't be 18 again for anything because you're right, kids, especially, can be cruel because they're all trying to find their place socially. However, in college there is so much more acceptance and so much less pressure to be like everyone else than there is in high school. If you could possibly get your GED and find a suitable college, you would find a place to fit in. If you have a good relationship with your sisters, you have, already learned the basics of being social. In a fairlly small college, you could answer questions freely without embarrassment, word would get around, & they would quit asking and continue accepting. You might have to be a little extra friendy, nice, more helpful, more caring of others, etc. - all the things that make a great friend. You can hold your head high and be who you are, which is a precious and unique young lady with the whole world ahead of her.
    spostma 3 Replies
    • August 22, 2013
    • 05:15 AM
    • 0
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