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Thread: 2-3% of the population.

  1. #1
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    2-3% of the population.

    I was reading something today that said people with curves of over 10 degrees make up only 2-3% of the population. & even if that's inaccurate, I think we can agree that it's uncommon.

    I don't know what exactly bothers me about that, but I don't like the fact that you could stop a random person on the street, ask them what scoliosis is, & they probably won't know. In my Anatomy class last week we were learning about spinal conditions, & one of them was scoliosis. A few people had a vague idea about what it was, but no one had a full understanding of it. I sat there & couldn't believe how clueless some people are. It's like, you know when you talk about that rare, strange disease in class & people refer to it like something they'll never fully understand or be confronted with? I know what that's like. But sometimes you just don't think, for one second, that someone in that very class may have that disease. & I learned that last week when they were talking about scoliosis that way - as if no one they ever knew, especially not anyone in that class, could ever have it, because it's such a strange, uncommon disease that's a million miles away from their daily lives. But it IS MY life, & it's just so hard to see people so seperate from it, like it's so beyond comprehension.

    Does any of that make any sense? I guess what I'm trying to say is that it's hard being in such a minority. I don't feel like people ever, truly get it - not unless you actually have to go through the treatments & x-rays & trips to the specialist & maybe (not in my case) surgery. & there's really nothing I can do about that, I guess. But I feel like everyone should know more about scoliosis. Because it IS real, it DOES exist, & it DOES affect peoples' lives. It affects MY life, & no one even knows what it is. That's why I hide it - because I feel like no one gets it.

    Is anyone else frustrated about this sometimes? I feel almost like no one cares, or maybe they're just too uninformed to know they need to care. I'd love it if scoliosis was more widely known about & understood. I'd feel so much better, because right now I feel like I can't share it with anyone. I'm extremely insecure & self-conscious about my scoliosis - & a huge part of it is because I feel like no one would get it anyway if I shared.

    Anyway. Half the time I was just venting :/ but... thoughts?

  2. #2
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    Oct 2005
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    That's the problem with alot of medical conditions, and with many of the physical challenges. People can't really understand what it's like unless they have experienced it. I was born with kidney problems, and I remember one teacher making certain assumptions about my needs who told me that any time I needed to go to the bathroom, I could just get up and go without asking. This was in grade school where it was basically unheard of to leave a classroom without permission. I didn't serve me well with the other kids - I was the "special" one, or I was different. Many people who have physical challenges like being blind, deaf, or say paraplegic, deal with this all the time. People who see them try to figure out what their needs are, but often can't because they haven't had to deal with it themselves and often times force themselves on the other person assuming that they are saying no to help out of pride, rather than the fact that they have it under control. One of the favorite stories I've heard, is of a blind person coming up to a curb at an intersection, to cross the street. Some other well meaning person insisted on helping them across the major street and then went on their way. The only problem was that the blind person only needed to cross the side street, not the main road, so they had to cross back over on their own, cross the side street, and then go on their way. Sometimes, when people act strange around someone who is physically, or medically challenged, it's because, it makes them uncomfortable because it forces them to face their own vulnerability..........it could be them. Since they haven't been taught coping skills to deal with it, it seems alot worse than it is to them. There are alot of people in your shoes and it's why message boards like this are so great, so that others can see that they are not alone.

  3. #3
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    natalie,

    Everything you said made complete sense to me! My question to you is why didn't you speak up and say that you have Scoliosis? You would be the perfect educator.

    When my daughter was diagnosed, I vaguely knew what Scoliosis was, but had never heard the word Kyphosis. (Try mentioning the word Kyphosis and watch the blank stares you'll get because most people haven't heard the word). I educated myself before she even had her first appointment with the orthopedic doctor and I was still lost with some of what he told us at the appointment. So, I went back and read some more. I have learned so much in the past 4 years.

    You should have seen my mother-in-law's reaction when I told her Jamie has Scoliosis and was very close to needing surgery. She acted as though I just told her she has a cold! She told me not to tell anyone! Why? I made it a point to tell as many family members as possible. See, in her family there is a condition called CMT, for short, that affects the muscles and severe Scoliosis is a side effect of the CMT. I was furous with her and she was furious with me when she found out I was telling everyone in the family.

    It didn't take long for me to realize I wasn't alone in my lack of knowledge about Scoliosis/Kyphosis. I have now made it my mission to educate as many people as possible.

    Hang in there and maybe you will get to a point where my daughter is now. She tells everyone about her back. She has done many reports in school. Whenever anyone asks her about her scar, she tells them. She took pictures of her x-rays to school and shared them during her anatomy and physiology class. She talks to people on-line and at our support group meetings. I feel that it is our job to educate people. If I can help just one person, I feel like I've done something.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  4. #4
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    I have a friend who's losing her eyesight, and frankly, I'd rather have scoliosis. Everything's relative.
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  5. #5
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    What I find amazing is my 14 year old son goes to a school with a population of 1500. At 2-3% of the population having scoliosis that means there should be 30-45 people in that school who have it. We only know of one other girl in who has scoliosis.
    I have made a point of telling everyone I can about it. People listen, especially those with kids of their own. Wish someone had educated me about scoliosis earlier and maybe I would have discovered my sons scoli while it could still be braced.
    mom of Patrick, age 15 at time of surgery
    diagnosed July 2006 curves T58 L 38

    Nov. 2006 curves T72 L38
    also lordoscoliosis

    feb.2007 curves T79 L43

    Surgery May 16 2007
    fused T4 to L1

  6. #6
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    Natalie, you are a very wise young lady. So much of what you have said is what I felt soooooooooo many years ago when I was your age. I remember many times standing naked in front of a mirror and crying about my deformity and wishing I could be normal like everyone else. And for the longest time I thought I did this to myself. I recall when I was around 13 or 14 my mother kept telling me to sit up straight and asking me why I keep carrying my school bag in my left hand. No one in my family ever had scoliosis, we did not have school screenings back then, and doctors never even looked at my back. It wasnít until a trip to the Field Museum in Chicago in the early 60s had me standing in front of the mummy exhibit and there was a mummy with scoliosis on display, and I said to myself, ďso thatís what I have.Ē Howís that for a diagnosis?

    You are fortunate to be young at a time when there IS more awareness about this disease and it is more treatable, especially at a young age. And even if surgery becomes necessary, itís far superior over what was being done when I was an adolescent. With that said, I believe there still remains a stigma associated with this disease even within the medical establishment. Although Iíve long since learned to accept my scoliosis and get on with my life, one of the more hurtful comments I received from a surgeon this past year is ďyou already have a significant deformity.Ē What that said to me is why even bother to seek treatment at this stage of my life.

    Hopefully, there will come a day when this disease is curable and there will no longer be a need for braces and/or surgery. And maybe youíll be fortunate to see it in your lifetime.

    Chris

  7. #7
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    My son went into his brace in early December. Since then he has been telling his friends on a need-to-know basis about the brace. Usually their reactions are first, concern ("You're not gonna die are you?"), second, curiosity ("Does it hurt?" or "How long do you have to wear that?"), and finally a sort of indifference.

    The 2-3% of the population thing is probably right. Dr. H says he mostly monitors kids with scoli and about 1 out of 5 of them will need bracing. The kids with the braces are the ones that might be noticed in the general population. But since the plastic braces can easily be hidden its hard to see. He also says he sees 50/50 boys and girls.

    Our family's geneology indicates that 2-3% is probably right. Out of family members on both sides, we've found 4 other relatives with scoliosis out of about 200.

    Most teenagers don't want to draw attention to their scoliosis, so it makes it difficult to tell who has it.

    My son has been picking up on clues about scoliosis and who might have it. He pointed out the other day a line in "My Name is Earl"-- "Other than scoliosis, the only thing I got from my grandpa was a cuckoo clock"--sort of made us wonder if someone on that show has scoliosis.

  8. #8
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    Florida
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    Silly me, I forgot to check back here until almost 2 months later, lol. Thanks everyone for your words of encouragement or for sharing your own personal stories. I have a long list of responses for each comment. Sorry it took me so long to reply!

    The Slice:
    I like the story about the blind person who had to cross the street again. Itís very true. Thanks for your wise words :] I am grateful that message boards like this exist so I know there are other people out there who do understand.

    Snoopy:
    Youíre right, Iím sitting here feeling frustrated because people donít know a lot about scoliosis, when Iím keeping my own knowledge a secret. Itís just hard for me to open up about it, Iím more of a private person & maybe I just donít know how. I picture myself talking to a group of friends one day & saying ďOh, by the way, I have scoliosisĒ, & that seems weird to me. & although I wouldnít lie if someone asked me, why would they think to?
    My family was similar when we found out Ė I was five, & my parents had no idea what scoliosis was. No one in my family had been diagnosed with it & they were just relieved to know that whatever was wrong with my back was nothing fatal & was treatable. & since then we all have learned so much about it. Thankfully my parents did what you did Ė they didnít try to hide it, & told the rest of my family, which gave me a lot of support.
    I admire your daughter for being so open about it, for me, itís a big challenge.
    Thanks for your reply :]

    Singer:
    Youíre right, it is all relative. I remember when my pediatrician first noticed my uneven shoulders & realized I had some kind of back problem Ė there was a whole possibility of conditions/diseases I could have had, some of which are fatal. When we found out I had scoliosis & that it was treatable, my mom was relieved but had a hard time seeing me wear a brace. But I knew it couldíve been worse & apparently I would tell her ďitís only scoliosis, momĒ. I try to remind myself of that often.

    Scoliboymom:
    Wow, I never did the math Ė that IS amazing. Iíve never encountered anyone with it at my school either, but then again, they could be just like me, keeping it pretty much secret.

    Chris WBS:
    Thank you :] That puts things into perspective, definitely. I guess I was lucky that they caught it quickly & while I was still young. I wore a brace to school when I was 5, 6, & 7 years old, when kids were a lot less judgmental & easily accepted it.
    Now I realize, compared to when you were growing up, awareness has definitely increased. Many people have at least heard the word before, when they had the screenings in school. I guess I should be happy that there has been advancements that will hopefully make it a lot easier to treat in the future.
    I hate hearing words like ďdeformityĒ or ďdisfigurementĒ when referring to scoliosis, & maybe thatís part of the reason why it scares me to talk about it Ė it is hurtful when someone calls it that, & itís easy for them to say because they donít live with it.
    Thanks for replying!

    Lab Dog
    Thatís exactly how my friends reacted when I had to wear a brace & frankly didnít have the ability to hide it. The only thing I worry about now that Iím a teenager is if the final stage of their reactions isnít indifference & is instead uncomfort or something.
    Wow, 1 out of 5? Thatís surprising! But youíre right, itís easy to hide, & for all I know Iíve met people with scoliosis & I never realized it. I have heard that itís hereditary, so the fact that 4 other relatives have it makes sense. Iím the black sheep in my family though Ė the first & only to be diagnosed.
    I was walking through the mall the other day & I saw a woman who looked to be in her 20s or 30s, & she was wearing a brace. I noticed it immediately, & I was so unbelievably shocked I nearly forgot to keep walking. Itís funny, these statistics tell us that itís more common than it seems like it really is.

  9. #9
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    Ohio
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    I know this is a fairly old thread, but I still want to add something! lol I completely understand how you feel. I've had scoli since I was 8 and wore a Milwaukee to school through elementary and middle school. Now I wear a tlso, and I had a providence in between. Even though kids didn't make fun of me, they never seemed to get what a struggle it was. It was/is sooo frustrating to me. I know it's always hard to put yourself in someone else's shoes, but I wish it was easier. My grandma always belittle's my conditions and says that I'm fine, and it makes me and my parents so mad. Especially when I found out last summer that my scoli had been caused by Chiari Malformation and Syringomyelia, an underlying condition that I had been born with. I had to have brain surgery 4 months ago, and that's when my grandma started getting concerned. But even then, to her it was just any old surgery. That's why I love forums like this one and Spinekids, because people genuinely and truly understand.
    Scoliosis for 8 years, Milwaukee, Providence & Boston braces. 35T 42L Dx'd with Chiari Malformation 8/06, decompression surgery + duraplasty 11/24/06.

  10. #10
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    May 2007
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    South Florida
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    Its true.. 3/100 (3%) people have it (mostly girls)and its sad thats most of them are not aware/ dont even know what it is.. When i first got my brace maybe one kid knew what this scoliosis thing was.. all the other people didnt know.. and its a shame because they might even have it and they are not aware of it..
    Last edited by ~ScoliosisGirl~; 02-20-2008 at 02:47 PM.
    My name is Rotem
    I am 13 and in 7th grade
    Started with 2 curves:
    34ļ Therotical
    50ļ Lumber
    I currently wear a Cheneau Brace
    Got my 1st on Nov. '06
    Got my 2nd on Nov. '07
    Just got my 3rd one today (May7 '08)
    and im still trying to get used to it
    Hoping I won't need surgery
    I live in South Florida
    3rd check on November 17,2007,
    Got an X-ray done Feb. 5th, with EXCELLENT news!
    30ļ Theoratical
    37ļ Lumber
    4th check on May 7, 2008

  11. #11
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    Jul 2007
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    4
    i know how you feel.. but in my case people underestimate scoliosis. they ask why i went to the doctor or something and ill be like i had xrays. they usually are like oh my god what for? and i say i have scoliosis and there like oh. like its not important or something. i guess they know people with minor curves so they feel every one is the same, and those with minor curves act like its nothing because frankly it is.. and those with major-severe curves get left out and no one tries to understand what it actually is. i feel judged and embarassed to tell people i had surgery for scoliosis. its much worse than people who had simple surgery for a slipped disk or something just because theyre backs were actually "broken". people dont understand how mentally and physically frustrating it is to have a spinal deformity all your life. when someone asks what kind of surgery i had i say i had a spinal fusion because that at least sounds half as important as what i had to go through. also when they ask why i say i have adolescent idiopathic scoliosis to proudly represent those other young kids with no choice but to accept their scoliosis while the rest of the world either doesnt care or doesnt even find the time to learn.
    Melissa
    16 years old.. junior in high school
    diagnosed at 10 with s-curve; large family history with scoliosis
    Boston brace when upper hit 32*
    braced from 2003-2005 (ages 12-14.. 6-8 grade)
    progressed to 54* (upper) and 42* (lower)
    posterior fusion august 10, 2006 at age 15 (10th grade) at Georgetown University Hospital by Dr. Lauerman
    upper curve down to 25*, lower to 14*
    i play soccer basketball and track... and i can still high jump

  12. #12
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    Nov 2007
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    23
    I think that its hard to believe that only 3% of people have scoliosis. and its even harder to believe that most of them dont know about it. At my school,which is a veryyyyy small school, (about 88 kids in the whole school), I am the only person who has a brace. But I know a few other people who have scoliosis and pretty much all of my friends at school know what scoliosis is because I have it, or because they have it themselves. And one girl's older sister, who doesn't go to my school, had a brace for like 2 or 3 years and ended up having surgery. All of my doctors said that scoliosis was very common, which I think makes it really hard to beleive that only 3% of people have scoliosis.
    -smoothie305

  13. #13
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    Jan 2008
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    73
    Same here, I am the only person at my school with a brace. This is out of about 320 kids.
    braceyourself.

  14. #14
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    Dec 2007
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    minnesota
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    Theres about 3 in our school out of 1200 that at least are diagnosed, with all the kids with the bad posture and way they sit, who knows if it isn't 10 percent with it. That stat seems about right, but I still don't find 2-3% uncommon...
    Danielle
    14 Freshwoman
    December 1st got no head the boston brace
    Pre Brace Curves:18C 25T 30L
    In brace curves: (1/23/08) 16C 20T 22L
    In brace Curves: (5/21/08) 19C 19T 15L
    We're Bringing CURVY BACK

  15. #15
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    Jan 2008
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    Yea, I don't know, but I think there may be one kid that was diagnosed and not braced. It's pretty interesting..
    braceyourself.

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