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Thread: Gene Associated With Adolescent Idiopathic Scoliosis Identified

  1. #121
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    Quote Originally Posted by flerc View Post
    There are two sets of members here: One containing those worry for them or their kids and the other cointining people doing an inmoral work here. The same that you are doing here since many years ago. And you are saying to be angry to be accused of having two accounts? If certainly you are not lying, you should to be angry for be confused with that member! She has to much to learn from you!.

    Rohrer, is sad for me to see you defending this kind of people.. really sad..
    Is this the post you are referring to?

    As far as Scoliscore goes, it's just a tool for monitoring purposes. No one is going to just go out and have surgery done on their kid because they scored high on a Scoliscore test. I would try EVERY alternative approach that I could (granted it made logical sense) before I would put my kid or grandkid through surgery, EVEN if they had a very high score. But for those that have had to have surgery, some of these arguments serve no purpose what-so-ever except to make them feel as if they have somehow failed their child. That's not fair to those parents OR their children.
    If it is, I really don't see what has you upset. I promoted alternative therapies (by that I mean nonsurgical) while at the same time giving parents of children who have had to undergo surgery some peace. Do you think that is a bad thing? I would be downright hurt if I had a child that I felt had no other option except surgery because all other options had failed, and be accused of doing something immoral to my child who I felt I had made the best decision for. That's really sad if you want those parents to carry around guilt about it, because I can guarantee you that NO parent would make that decision in haste. I was told once that I needed surgery. I cried for three days and couldn't eat. I know that, as a parent, this is even tougher to hear about your child. I do NOT take this lightly or blindly. Please quit attacking my character. There are no "sides" and I'm certainly not in any clique on this forum. I try to be respectful to all and see their point of view. If you look in my profile you will see that I do not accept friend requests or join groups FOR THIS VERY REASON.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  2. #122
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    Quote Originally Posted by Dingo View Post
    (facepalm) Natural selection never rests. It doesn't have a choice. It's always operating on us. Period.

    Without getting too specific the reason I've been writing lately is because it's either that or play video games. My current project runs itself and my next big project doesn't start until June.

    So in June you will be free of me reminding you that Scoliosis isn't caused by heredity. 8-)

    Maybe a little sooner.
    Argh! You yourself keep saying, "genetics + environment = disease." Are you now going back on that claim? Look at the title of your thread, for cryin' out loud.

    My point is: Don't expect "Natural Selection" to work in favor of the human race. We work counter to any notion that there is a "Survival of The Fittest". People in industrialized nations are weak and lazy for the most part. We eat junk diets and do everything BAD. We certainly aren't getting "Fitter".

    So you admit that you're just stirring the pot because you have nothing better to do? Maybe you should master the Soccer Head game on the Wii Fit Plus rather than cause so many passions and contentions to fly. You know a perfect score on the beginner level is 755. Try getting 350. Just a thought.

    Oh, and you had made a comment that it is hard for you to look at your son's back without a shirt on. I know you meant that in a way that it saddens you. But those of us with scoliosis are often self-conscious about our appearance. Please, don't let him EVER know that you said that, so that it wouldn't be taken out of context. A 20* curve really doesn't cause much deformity at all. Having some good self-esteem will help him through this. This is just from one parent to another AND my experience with living with deformity. I hope his next check-up goes well and he holds or improves. You can't give up hope. My son's scoliosis was almost as bad as Scott's when he was Scott's age. I never did anything and it is completely gone. Hopefully, especially since you are so proactive and ARE doing something, the same will happen for Scott.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  3. #123
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    Quote Originally Posted by rohrer01 View Post
    Is this the post you are referring to?



    If it is, I really don't see what has you upset. I promoted alternative therapies (by that I mean nonsurgical) while at the same time giving parents of children who have had to undergo surgery some peace. Do you think that is a bad thing? I would be downright hurt if I had a child that I felt had no other option except surgery because all other options had failed, and be accused of doing something immoral to my child who I felt I had made the best decision for. That's really sad if you want those parents to carry around guilt about it, because I can guarantee you that NO parent would make that decision in haste. I was told once that I needed surgery. I cried for three days and couldn't eat. I know that, as a parent, this is even tougher to hear about your child. I do NOT take this lightly or blindly. Please quit attacking my character. There are no "sides" and I'm certainly not in any clique on this forum. I try to be respectful to all and see their point of view. If you look in my profile you will see that I do not accept friend requests or join groups FOR THIS VERY REASON.
    No, I not remember that post. I was refering to your defenses when I reply to Pooka1 (or that Spiderprug) Do you need I quote them? Certainly I'm not attacking you, all the contrary. I never would say that about the defenses of Mariaf for instance. I ever knew about her behaviour and never may surprise me what she does in that sense.. ok forget what I said in that post, I will delete the comment I did about you in it.
    Last edited by flerc; 05-18-2013 at 01:48 AM.

  4. #124
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    Hdugger,
    This is the hard part about communicating by writing, without tone of voice or body language. My last post to Dingo was NOT meant to be harsh, but may appear that way. I want to make one thing clear. I do not discuss evolution on this forum. I don't think this is the place for it, especially since everyone here is not an evolutionist (example: the attack on Susie*Bee). I will, however, discuss the different theories and ideas people have about the topic, such as "Natural Selection" and "Survival of The Fittest". So I just want you to know that this is my position on that matter.

    I was in fact trying to jest with Dingo about stirring the pot because of his comment. I think he's actually a nice guy. The reason I post on his threads, and I had determined not to at one point, is because he contradicts himself, a LOT. Those of us that have been on the forum for awhile know his position, but his threads waver and can be really confusing to a newbie. I challenge him on things because he's intelligent enough to come back with an answer. Sometimes, however, his answers aren't really answers because he doesn't know. I applaud the database of articles that he has. I have actually learned some pretty interesting stuff from reading some of them that apply to scoliosis. I don't read the unrelated articles because he uses them as "examples".

    Despite the stance Dingo takes, he's actually made a case for heredity. Although, I will admit (be proud Dingo) that I went from thinking along the lines of straight inheritance to the combination of genetic and environment. I honestly do not think that the environmental component is a pathogen just as strongly as he thinks it is. There are so many other environmental things that it could be. No offense intended, but I do think that Dingo is in his own little world sometimes. He has an idea and no matter what evidence is shown to him or what logic is offered, he won't budge. That's why I didn't jump all over that random poster. But if you read that post it was kind of a dig at me, too, in a way because I "bother" to debate with Dingo. That's why I said, "Thanks, I think." When Dingo isn't challenged back, he goes on and on and on about really off topic stuff. That's why I feel it's better to keep him engaged in one thread. Sorry, Dingo, but that's how I see it.

    So, honestly, I guess the bottom line as to why I post with Dingo is because he makes me think and I like that. Words look harsh on the screen, but I rarely get my ire up. I've never accused anyone of folk science. I have been annoyed when he gets on a role and starts posting random, off topic things in the research section. I jump in and try to clarify or redirect (maybe not as well as you or in your style). But, hey, I have been viciously attacked for posting research papers, too. Why? Because people took it the wrong way.

    I've been bashed pretty harshly because I like Sharon, too. She says some things that I totally disagree with, too. Things that are not debatable. I've had my share of run-ins with her when I was new to the forum and my posts were deleted by Linda and Sharon's stood. That made me really upset. Instead of being vile, I spoke with her privately about our serious differences. So I just try to look at everyone's point of view. I think Sharon feels attacked because her daughters were both fused and she stands by her decision. She watched her daughter suffer in a brace that did no good. So she's upset about that stuff. She's also a researcher and this is the research section. So when people talk about or push their ideas without using legitimate research methods, that gets her ire up. We are all human with human feelings.

    Flerc also comes up with things that others maybe haven't thought of. I appreciate his ideas, too. But lately he's really been attacking me personally and I feel that he doesn't like me right now because he thinks I'm a co-conspirator with Sharon. I'm not. I don't know what to say about that. I think it is wrong to start a thread specifically aimed at ANY forum member. It wasn't generalized. She was named. That's why I came to her defense in the other thread. I would have done that for anyone, even Dingo, even Flerc.

    I think there are some very strong personalities at play here. If we're all adult about it we can get along. I harbor NO HARD FEELINGS toward anyone on this forum. I apologize if I seem rude or harsh. I tend to be tactless and maybe that's the problem. Sorry.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  5. #125
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    you've never seemed rude to me on any posts i have read of yours...and i can say the same of Sharon and Maria...

    sticking to ideas and not personalities would be a great thing for this
    forum...
    i do not think that will happen as long as sniping accusations are directed
    at people who are as honest as Sharon, as compassionate as Maria, or
    as kind as rohr...
    and yes, Sharon...you are the LAST person i would ever think would not
    stand up and sign her true name to her posts...that is just not you.

    it is not good to be reading a thread and wondering the whole time when
    the next personal attack will be popping up....interferes with true purposes of communication, thought, discussion, debate....

    jess

  6. #126
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    The irony here is I was not interested in engaging with this latest thread in the research section until I was accused of having two accounts. That is to accuse me of being dishonest and that won't stand.

    I stand for science and ration and reason and especially not bashing the only people who know what they are doing... the researchers. Not being a scoliosis researcher is no crime. This research section would improve a lot if folks truly accepted that.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #127
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    Quote Originally Posted by rohrer01 View Post
    Oh, and you had made a comment that it is hard for you to look at your son's back without a shirt on. I know you meant that in a way that it saddens you. But those of us with scoliosis are often self-conscious about our appearance. Please, don't let him EVER know that you said that, so that it wouldn't be taken out of context. A 20* curve really doesn't cause much deformity at all. Having some good self-esteem will help him through this. This is just from one parent to another AND my experience with living with deformity. I hope his next check-up goes well and he holds or improves. You can't give up hope. My son's scoliosis was almost as bad as Scott's when he was Scott's age. I never did anything and it is completely gone. Hopefully, especially since you are so proactive and ARE doing something, the same will happen for Scott.
    Thanks for that insight, Rohrer. You are in a position to give us a unique perspective having been on both sides (patient and parent). Yes, I'm sure Dingo meant that it saddened him to look at his son's back and see anything other than a perfectly straight spine. Been there, done that. And, no, in those moments, I have never let on to my son that anything I saw concerned me in the slightest, for the very reaons you stated and because I would not want him to worry about something that probably only was noticed by me (meaning that anyone else looking at him would probably not see a thing out of the ordinary).

    Dingo - try to remember that Scott's spine doesn't have to be at, or ever get to, 0 degrees. You are doing a great job and there are a ton of people walking around with small curves and it has NO effect on them at all. If my son ended up with a curve between 15-20 degrees and it remained there all his life, I would consider that a victory given where he started. But I know it's hard because these are our children and we wanted everything to be totally perfect for them. Just proves we're human, but try not to torture yourself too much
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  8. #128
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    Quote Originally Posted by jrnyc View Post
    you've never seemed rude to me on any posts i have read of yours...and i can say the same of Sharon and Maria...

    sticking to ideas and not personalities would be a great thing for this
    forum...
    i do not think that will happen as long as sniping accusations are directed
    at people who are as honest as Sharon, as compassionate as Maria, or
    as kind as rohr...
    and yes, Sharon...you are the LAST person i would ever think would not
    stand up and sign her true name to her posts...that is just not you.

    it is not good to be reading a thread and wondering the whole time when
    the next personal attack will be popping up....interferes with true purposes of communication, thought, discussion, debate....

    jess
    Thanks, Jess.

    It was mentioned that often with the written word, it's difficult to interpret the tone. That's why if you know someone it is probably easier to take an educated guess about what they meant rather than jumping to the wrong conclusions. I'm not trying to stir things up again, but rather genuinely asking folks to think about the fact that maybe, just maybe, it's better not to jump to conclusions about what someone intended, or what they were thinking, so that we can get back, as you say, to meaningful communication, disucussion and debate.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  9. #129
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    Quote Originally Posted by jrnyc View Post
    [COLOR="#0000CD"]you've never seemed rude to me on any posts i have read of yours...and i can say the same of Sharon and Maria...
    MY GOD!!!!! Hdugger, does we must to laugh or to cry?
    Last edited by flerc; 05-18-2013 at 09:23 AM.

  10. #130
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    Quote Originally Posted by flerc View Post
    MY GOD!!!!! Hdugger, does we must to laugh or to cry?
    Flerc,

    I'm sorry this forum has allowed people to be absolutely bullied and hounded off this site for over five years. My daughter was twelve and just diagnosed with scoliosis and had been directed to this site by her first orthopedic surgeon. She is now eighteen and graduating from high school. I was absolutely stunned and sickened to see the rampant bullying where certain people were gleefully bullying people off the site. I tried to stand up at that time to them, and as you can see, it has been a completely useless and futile effort.

    I agree with you completely about the dynamics of this forum, as do the many others who couldn't bring themselves to post because of the attacks that were sure to come.

    Every single thread gets buried on this site. It is totally useless.

    I'm sorry for you that you probably won't receive any help, I tried to help those being bullied and received sh_t in return. Good luck to you and your daughter, I hope you are able to find the help that you and your daughter need and deserve.

  11. #131
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    Quote Originally Posted by Ballet Mom View Post
    This is very interesting. Were the potential scoliosis genes identified here in the United States only found in the race used by the researchers and not other races?

    Updated on 5/18/2013

    I am updating my own information I found regarding my own question here because this thread had been buried as usual and no one could possibly find the information unless they wanted to spend centuries listening to useless and pointless commentary.

    Ward K: Comparing apples and oranges: pathogenesis of adolescent idiopathic scoliosis varies by patient ancestry. In Scoliosis Research Society 47rdAnnual Meeting and Course, Chicago, Illinois, USA, September 5-8th. 2012, 90.


    Prognostic testing cannot be applied to all racial groups without modification

    In the USA, Ward [148] compared DNA samples from AIS patients with controls from Asian and African ancestry. DNA markers were related to AIS progression and vary by race. Differences in gene variants will translate into differences in the underlying chemistry of AIS causing different clinical expression.

    So apparently, perhaps the Japanese researchers in the study posted above may have found a more universal gene possibility than at least the Utah Scoliscore researchers. Interesting.

    I am not going to spend the time to try and research the Texas gene results. Life's too short and apparently no one is very interested.

    I have updated information regarding the actual topic of this original post by Dingo. I am placing it in my original question so anyone interested might actually find the information.
    Last edited by Ballet Mom; 05-18-2013 at 01:12 PM.

  12. #132
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    Quote Originally Posted by hdugger View Post
    I'm going to try listening to more Victor Hugo. I'm finding it very soothing. What a sweet, sweet man.
    That sounds so relaxing, even though I've never listened to him. Enjoy and have a good day. I'm frantically working on Vacation Bible School stuff (directing it) and end of school year things (3 more days!!!) so my life is quite hectic right now. And the forum isn't very soothing. I should close it up and leave it alone. Yet it always draws me back for some reason. It may seem strange, but something happened when I discovered it-- 5 months after my surgery. I bonded with many of the people, became an addict during the year I had to take off from my job, and even though I don't spend as much time on here as I used to and I don't know very many of you like I used to know some of the others, I still love the forum. Even with its flaws. To me it's a place to go where there are people who understand. Outside of here I only know one other person with scoli. She is at my church. She had fusion surgery w/o instrumentation in the '60s, in a full body cast for a year, and is over 100 curved now. You are my family in so many ways. But my biological family doesn't fight like you do. It pains me so to read these posts. I understand that we learn from sharing, "Iron sharpens iron, so one man sharpens another." But it doesn't have to be mean and ugly.

    And I hope Dingo and his family have a wonderful day in Disneyland. I first went there in 1957! Baby days for the empire.

    Take care, one and all. We can work through things.
    66 and still heartbroken...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  13. #133
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    Well, I was agnostic at best until 34. (My mother was a secular humanist.) My husband was an atheist. Things change. Thank God.
    Last edited by Susie*Bee; 05-18-2013 at 03:51 PM.
    66 and still heartbroken...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  14. #134
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    Quote Originally Posted by hdugger View Post
    He feels (and correct me if I'm wrong, Flerc) that one person has been allowed to completely disrupt/halt/shut down a whole range of topics on the biggest forum about scoliosis in the US. Important topics. Topics that really matter, that might end up making a difference in someone's life. And Flerc starts *one* thread - just one, not hundred. One damn thread. And *that* is the single thing which must be defended against?

    And, it's not just scoliosis topics. Why is it, again, that we can't even have some say "I'll pray for you" but we can have 100 topics about folk medicine? Because Sharon makes such a fuss about every sign of religion that, I think, Linda decided it was just easier getting *everyone else to not say a single thing about faith/belief, however innocuous", then try to reign Sharon in.
    Hdugger, I'm not having so much time now, so sorry I'll be brief. Yes, more precisely, her obvious work here is to not allow to put in doubt that if the offical western medical community cannot help (as happens in many cases) then nobody, even God could help us.. of course she says that nothing as God may exists (would be a big competence) and of course the help that that community may give is the only one honest, effective.. only idiots/ignorants/desperate people may think something different. Nothing may be more obvious is a fact! We have tons of evidence!
    Last edited by flerc; 05-18-2013 at 04:51 PM.

  15. #135
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    Certainly her inmoral work consists in stop all ideas in every thread, saying ever the same, when she may say it only here http://www.scoliosis.org/forum/showt...he-only-option .. but if she would does that, she would not be doing her work..
    Last edited by flerc; 05-18-2013 at 05:07 PM.

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