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Thread: How many of you have more than 1 child with Scoliosis?

  1. #31
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    Quote Originally Posted by hdugger View Post
    Drifting slightly off-topic, in one of the references I looked at about multifactorial diseases, they talked about them being more likely to occur in one gender or the other. In families where a member of the less-affected gender had the disease, there was a higher risk of it showing up in other family members.

    Ah, here's the text itself:

    "The disease occurs more frequently in one gender than in the other, but it is not a sex-limited trait. In addition, first-degree relatives of individuals belonging to the more rarely affected gender have a higher risk of bearing the disease (International Commission on Radiological Protection, 2000)."

    http://www.nature.com/scitable/topic...ic-disease-919

    So, a male with scoliosis (but not congenital scoliosis) is more likely to have relatives with scoliosis. At least, according to this.
    According to the Ruth Wynne-Davies study linked above:

    The male and female relatives of male
    and female index cases were analysed separately,
    because the sex incidence is unequal
    in both early and late onset groups. The
    results indicated only that the groups in
    which scoliosis is commoner (infant boys
    and adolescent girls) had more affected
    relatives than those in which it is less
    common (infant girls and adolescent boys).

    There was an approximately equal incidence amongst
    parents, siblings and children population and among, the relatives of scoliotic
    patients. (3 per cent, 5 per cent, 5 per cent).
    Last edited by Ballet Mom; 03-20-2011 at 02:11 AM.

  2. #32
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    Quote Originally Posted by Ballet Mom View Post
    Until scientists can show the genes that are causing the scoliosis in the 75 percent of scoliosis patients that don't have family members with scoliosis,]
    They can't just know that no other family members have it. They have to show it. They have to radiograph every member, living and dead. I suggest that has never been done. Do you disagree? Really?

    The main conclusion from these threads is that it is obvious that it is impossible for bunnies to sort out the terminology when various researchers are clearly using these terms to mean different things at different times. I am very sure the great run of players here simply do not realize this is happening as evidenced by the posts above.

    I can post references with at least TWO entirely different meanings of "environmental," "multifactorial," and "familial." At this point, the honest way forward is to admit there is multiple usages and to try to figure out which is which when they are used. I suggest there is nobody in this sandbox who can do this because there is nobody who is familial enough with the body of the literature. This is beyond obvious at this point.

    Taking the 2009 talk about the top hypotheses (these are not yet theories in my opinion and the author admits that), if you ask what are these guy researching in the way of etiology of idiopathic scoliosis, it is all straight genetics or stuff modified by genetics. That is why he started the talk with the comment, "It's all genetics." Note also no mention of the germ theory of scoliosis.

    From the 2008 Wise et al. article, the consensus of the researchers is that IS is a complex genetic condition. You might also note that neither this paper nor do the great run of papers make a distinct between the autosomal dominant form and the rest. Think about the reason for that. Because the presentation of the cases in the autosomal dominant group are identical as far as anyone knows to the other cases, it appears to all be the same thing with some looking like autosomal dominant inheritance at one end and some looking like complex multifactorial genetic inheritance at the other.

    While one might disagree with IS being a complex genetic condition, it is perverse to deny the researchers working in this field don't have a consensus that it is a complex genetic condition. That why I can safely put the genetics deniers in with the flat earthers, evolution deniers, old earth deniers where consensuses exist there also.
    Sharon, mother of identical twin girls with scoliosis

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  3. #33
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    Quote Originally Posted by hdugger View Post
    I kind of wonder, then, why people with a clear genetic inheritance are lumped in with the idiopathic group, since it seems like the cause of their scoliosis *is* known.
    This is another example of how bunnies cannot wrap their minds around something "idiopathic" STILL having a consensus of researchers claiming it is genetic. This could be the textbook example of that because it pops up so frequently.

    This is why when a researcher reads "environmentaL" they think epigenetics or maternal age or hormone milieu whereas a when a bunny reads, "environmental" they think tse tse flies and slouching. Communication is impossible under those circumstances.

    The fact that us bunnies have to wonder about issues like this helps define the huge gulf between the bunnies and researchers. What is mysterious to us is simply accepted consensus among the researchers. There are no internal inconsistencies on this point of idiopathic being genetic if you know the field.

    Last, I suggest there are parallels to be drawn between the threads on terminology in this forum and Feynman's comment about quantum mechanics, "If you think you understand quantum mechanics, you don't understand quantum mechanics".
    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."

  4. #34
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    Let's just stipulate that a genetic predisposition occurs in almost all diseases and conditions and therefore we need to call most diseases multifactorial and genetic. That's a very helpful term to let everyone know that the researchers don't know the cause because it's complex. When Carol Wise can show that the gene she's discovered is causing scoliosis, I'll be impressed. And when she can run a test and show it causes scoliosis on all the cases of scoliosis without family members having scoliosis I'll be duly impressed.

    Until then 53 genes that may or may not show the tendency to progress in scoliosis does not show that genetics is causing scoliosis.

  5. #35
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    I'll agree with you that it is pointless.

    I will wait patiently to have researchers prove that genes are what is causing all cases of idiopathic scoliosis.

  6. #36
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    Quote Originally Posted by hdugger View Post
    The genes underlie it, just as they underlie almost all disease. Pale people with freckles (genetic) get skin cancer (disease) when exposed to a bunch or sunlight (environment). Likewise in scoliosis, thin hyperflexible people (genetic) get scoliosis (disease) when exposed to who-knows-what (environment). Or whatever the genetic basis is.

    So, they can show that there's a genetic component now (again, as they can in almost every disease condition). They can't say anything very intelligent about it, and they can't predict the course of the disease except on the very tips of the genetic scale, but they can show that it exists.

    If there were more money in non-genetic research (which there's not, because genetics are kind of a medical fad at the moment) they could try to get the same kind of specificity on the environmental factors which actually *trigger* the disease (as opposed to the genetic factors, which appear to only determine progression once the disease is triggered). That would be useful info - if, you know, someone could get money to research it. Which they can't. But, if they could, they could maybe keep the disease from happening altogether. Again, too bad there's not any money for that.
    Exactly right.

  7. #37
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    Quote Originally Posted by Ballet Mom View Post
    Let's just stipulate that a genetic predisposition occurs in almost all diseases and conditions and therefore we need to call most diseases multifactorial and genetic.
    Let's instead just stipulate that the consensus of the researchers in IS are working on the hypothesis that IS is a complex genetic condition and that bunnies are bunnies.

    And speaking of multifactorial, when used in this type of construction, if I recall correctly, researchers mean things like variable penetrance (a genetics concept) and heterogenicity (yet another genetics concept). You can also probably find some IS researchers using "multifactorial" to mean other things besides modes of inheritance but I haven't come across that yet.

    So as far as I can tell, when researchers who study IS talk about the etiology of IS as being "multifactorial", they are referring to types of genetic inheritance. Posting general definitions of these terms outside of their specific instance usage is less than useful obviously.
    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."

  8. #38
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    Until researchers prove that all cases of idiopathic scoliosis are genetically inherited, idiopathic scoliosis remains idiopathic.

    I'm not sure why you continue to insist that something is proven when it isn't.

  9. #39
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    The fact that you think I am claiming something is proven (beyond what the consensus is of the research community which isn't really rocket surgery to "prove") tells me you aren't following along.

    Among researchers, if there is a consensus, it is based on where the evidence is leading.

    Among bunnies, denials of facts or of research consensus are based strictly on emotion and lack of relevant training.

    What I have learned from these interminable threads is there is a strong emotional reason to deny that the scientific community is focusing on the genetics w.r.t. idiopathic scoliosis. It is exactly analogous to denying evolution or an old earth or the roundness of the earth.

    That, in a nutshell, sums up the unnavigable divide between the scoliosis researchers and the bunnies. I am one bunny who has no opinion about the research directions because... wait for it... this isn't my field. How other bunnies can have an opinion borders on the comical.

    That is not to say I can't figure out what the research direction is. In this case, we have a recent talk from a researcher (Jack Cheng) whose research group is clearly involved in several lines of inquiry working with several other research groups from around the world. If he sums up the current research directions, I suggest it is probably an accurate assessment of the state of affairs, at least as of 2009. We also have any number of researchers claiming a significant contribution of genetics to IS.

    If anyone can find any researcher claiming this is not a complex genetic condition or that they are pursuing a NON-genetic approach towards "multifactorial" or "environmental" etiology, I would like to see it. Thanks.

    Love,
    A bunny
    Last edited by Pooka1; 03-20-2011 at 07:58 PM.
    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."

  10. #40
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    Quote Originally Posted by Ballet Mom View Post
    Until researchers prove that all cases of idiopathic scoliosis are genetically inherited, idiopathic scoliosis remains idiopathic.
    It is very clear from the multiple mentions by researchers of idiopathic scoliosis and genetic in the same breath that it can be genetically influenced and ALSO still be idiopathic. So we, as bunnies, must accept that and figure out why those terms do not conflict for these researchers.

    My guess is that because there may not be a consensus as to which gene(s) and loci(s) are involved or what these genes exactly are doing.

    So I guess if they don't know all genes and exactly what they do, they can label something idiopathic AND genetically influenced and STILL sleep at night if you can believe it!

    It is the job of every rational bunny to accept the FACT that researchers have no problem WHATSOEVER with calling idiopathic scoliosis a complex genetic condition.
    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."

  11. #41
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    Quote Originally Posted by Pooka1 View Post
    The fact that you think I am claiming something is proven (beyond what the consensus is of the research community which isn't really rocket surgery to "prove") tells me you aren't following along.

    Among researchers, if there is a consensus, it is based on where the evidence is leading.

    Among bunnies, denials of facts or of research consensus are based strictly on emotion and lack of relevant training.

    What I have learned from these interminable threads is there is a strong emotional reason to deny that the scientific community is focusing on the genetics w.r.t. idiopathic scoliosis. It is exactly analogous to denying evolution or an old earth or the roundness of the earth.
    Let me refresh your memory as to why I even stepped into this pile of poop.

    Quote Originally Posted by Pooka1 View Post
    The risk is small but there because of the genetic nature of idiopathic scoliosis...

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2674301/

    Another reference says fraternal twins (= any sibling-sibling pair) both have scoliosis about 1/3 of the time and identical twins have scoliosis about 75% of the time essentially proving the genetic etiology.
    In case you didn't realize, this statement of yours claims that a genetic etiology...i.e. a genetic cause...has been essentially proved. I am claiming that I couldn't care less if it turns out to be genetically inherited, genetically influenced, or occurs because of some organism such as varicella imbedded in the spinal cords of people who respond to it for some reason, perhaps due to their inflammatory response.

    What I do insist is these researchers make darn well sure that when they are studying familial scoliosis, by necessity, they ensure that that genetic inheritance, if found, is also found in all the other 75 percent of scoliosis cases that do not have family members with scoliosis.

    There is a lot of difference that I see between different idiopathic scoliosis cases. I could very easily believe that there are very different causes of different types of scoliosis. So before they start claiming that this Scoliscore test works so accurately for everyone, which it doesn't...they actually figure out why it doesn't. And before they take bracing away from patients because they think so few respond, perhaps they need to figure out if those with family members which also includes a lot of juvenile scoli cases respond differently than those other 75 percent of patients without family members affected.

    You know, you would come off a whole lot better if you didn't try to insult people with every comment. Lots of people are a lot more intelligent than you like to think. I know it would shatter your worldview to think otherwise.

  12. #42
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    Quote Originally Posted by Pooka1 View Post
    It is very clear from the multiple mentions by researchers of idiopathic scoliosis and genetic in the same breath that it can be genetically influenced and ALSO still be idiopathic. So we, as bunnies, must accept that and figure out why those terms do not conflict for these researchers.

    My guess is that because there may not be a consensus as to which gene(s) and loci(s) are involved or what these genes exactly are doing.

    So I guess if they don't know all genes and exactly what they do, they can label something idiopathic AND genetically influenced and STILL sleep at night if you can believe it!

    It is the job of every rational bunny to accept the FACT that researchers have no problem WHATSOEVER with calling idiopathic scoliosis a complex genetic condition.
    I am very well aware that there is no doubt a genetic influence as there is in everything. Etiology means cause. Until researchers find out what causes all the different, various cases of scoliosis, the cause(s) or etiology remains idiopathic. I'm not sure what's so difficult to accept about that.

  13. #43
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    Quote Originally Posted by Ballet Mom View Post
    Let me refresh your memory as to why I even stepped into this pile of poop.

    In case you didn't realize, this statement of yours claims that a genetic etiology...i.e. a genetic cause...has been essentially proved.
    IT IS ACCEPTED THAT "IS" IS GENETIC. The reason it is accepted is from evidence like a 75% concordance rate between identical twins. The only people who do not accept the genetics of this are bunnies.
    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."

  14. #44
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    Quote Originally Posted by Pooka1 View Post
    IT IS ACCEPTED THAT "IS" IS GENETIC. The reason it is accepted is from evidence like a 75% concordance rate between identical twins. The only people who do not accept the genetics of this are bunnies.
    It's like hitting your head against a block wall.

    It may be genetic to some people because they inherited it directly from their family tree. It may be genetic to other people because they have lax joints and do ballet and rhythmic gymnastics. It may be genetic to some people because they have a virus residing in their spinal cord, affecting their CNS and their inflammatory response. They could all be genetically influenced, and yet all different, and still produce the symptom of scoliosis. They don't necessarily have to be the exact same cause.
    Last edited by Ballet Mom; 03-20-2011 at 09:55 PM.

  15. #45
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    Quote Originally Posted by Ballet Mom View Post
    I'm not sure what's so difficult to accept about that.
    Fact 1: Researchers call IDIOPATHIC scoliosis a COMPLEX genetic condition.

    Fact 2: Bunny A does not understand why those terms don't conflict.

    Fact 3: Just because Bunny A doesn't understand why "idiopathic" and "genetic" don't conflict doesn't mean they conflict for researchers.

    This isn't my game and I don't really have a damn clue why those terms don't conflict. All I can do is ACKNOWLEDGE that they don't seem to conflict for researchers in this field which is really the only thing that matters.
    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."

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