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  • #76
    Originally posted by Prfbones View Post

    Edit: Sorry Pooka, just read your post. Your doing it right:-)
    I am in a different field but some things in other fields just fall out along logical lines.

    I hope you stay. We need more people trained in a relevant field. At present it is mainly bunnies talking to bunnies except for McIntire.

    ETA: We do have a few non-bunnies besides McIntire... the lovely and talented Linda Racine who knows many scoli facts, the equally lovely and talented tonibunny who also knows many fact and helps run another scoliosis forum, hdugger who understands the limitations of the literature specifically and research in general, rorher01 who has significant science training, Pnuttro who is a biomedical researcher (non-scoli field), etc.
    Last edited by Pooka1; 05-25-2010, 08:42 AM.
    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."

    Comment


    • #77
      Originally posted by Prfbones View Post
      AIS: watch the homeobox (HOX) genes that control symmetry. In AIS patients, their mutated product (multiple mutations btw) will be up or down regulated during adolescence with hormone responses. That will be the major contributing factor to severity of scoliosis in adolescents, everything else will just be collateral damage. It's pretty simple really.

      It's genetic. No doubt about it.

      And just for clarification, Rule Number 1 of bone research: never ever ever ever correlate bird data to humans. Any researcher that does so is way out of their element.

      Edit: Sorry Pooka, just read your post. Your doing it right:-)
      This may be a dumb question, but since you mentioned the surge of hormones at adolescence upregulating or downregulating the mutated gene product, could hormone therapies during adulthood "trigger" the same response and cause the scoliosis to progress?

      I ask this question because both of my curves have progressed over the past two years +/-5* and the situation during these two years were:
      1. Chiropractic treatment (very intensive bone crunching in the scoliotic regions)
      2. My daughter had a baby and lives with us, so more lifting
      3. Fertility treatments with several hormones or hormone altering drugs (mulitple shots and pills each cycle)

      BTW I am totally convinced that scoliosis is hereditary. After being diagnosed, we have since learned of several affected family members, including my neice and my own daughter. My family "tree" makes for a pretty good pedigree that supports its genetic basis. Ogilvie's research only confirmed what many already knew.
      Be happy!
      We don't know what tomorrow brings,
      but we are alive today!

      Comment


      • #78
        heredity

        rohrer01

        BTW I am totally convinced that scoliosis is hereditary.
        I suppose that somebody has to be on the losing side of every bet.

        The lifetime risk for type 1 Diabetes is 1 in 100, but if you have one affected family member your risk can be as high as 1 in 10. That's not so different from Scoliosis.

        Joslin Diabetes Center (affiliated with Harvard Medical School)

        If an immediate relative (parent, brother, sister, son or daughter) has type 1 diabetes, one's risk of developing type 1 diabetes is 10 to 20 times the risk of the general population; your risk can go from 1 in 100 to roughly 1 in 10 or possibly higher, depending on which family member has the diabetes and when they developed it.
        Sounds pretty genetic right? Not so fast.

        Study Of Human Pancreases Links Virus To Cause Of Type 1 Diabetes

        In most cases these children probably have a genetic susceptability to a particular virus. Or looked at another way a virus may have evolved a mechanism to overcome the defense offered by a particular gene, or gene combination. It's possible that in the not too distant future a vaccine will eradicate the virus that triggers Type 1 Diabetes.

        Nobody knows what causes Scoliosis. The fact that some families are hit particularly hard by AIS means a lot less than many people in the general public might think.

        You might find this abstract from 2008 interesting.
        Case Study of identical twins discordant for Scoliosis.

        RESULTS: One of the sisters was considered to be suspicious of suffering from scoliosis. The radiologic evaluation that followed confirmed the existence of adolescent idiopathic scoliosis (left thoracolumbar curve of 32 degrees as measured by the Cobb angle). The clinical and radiologic evaluation of her sibling failed to reveal the existence of any spinal deformity.

        CONCLUSION: Adolescent idiopathic scoliosis seems to be a multifactorial skeletal disorder. The role of exercising and heredity in its development remain controversial.
        Last edited by Dingo; 05-19-2010, 11:44 PM.

        Comment


        • #79
          Identical twins may not be a good study model for midline disorders like scoliosis. Comment on that point is conspicuous by its absence in the above post.
          Also, identical twin studies with larger numbers of subjects show a very definite genetic component. But those are ignored in favor of a paper that deals with ONE pair of twins. We continually get regurgitated irrelevant comments about other diseases that are shoehorned to fit an ignorant, lay paradigm.

          Comment about homeobox genes was conspicuous by its absence in the post immediately above. Its almost like if it doesn't fit into a preconceived notion then it can simply be ignored.

          Trying to prove a point, not engaging in trying to disprove competing points and in fact ignoring them out of ignorance, etc. are hallmarks of folk science, folk medicine and folk biology. Textbook case here.

          There is no substantive difference between the claim that scoliosis is not primarily a genetic disease and the claim that the earth is flat in terms of amount of evidence.
          Last edited by Pooka1; 05-20-2010, 05:38 AM.
          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."

          Comment


          • #80
            Originally posted by Dingo View Post

            You might find this abstract from 2008 interesting.
            Case Study of identical twins discordant for Scoliosis.
            The one twin has a left TL curve. Something like 70% IIRC of left curves often have an underlying cause (chiari, syrinx, etc.).

            Note how different the conclusion might be if they found 100 identical twin pairs each with ONE having a typical right T curve. There is a reason we don't see that.

            No discussion of obvious things like this not to mention the non-obvious ones. This is the danger of dabbling in the literature with no relevant training whatsoever and indeed not understanding the limitations of the literature whatsoever.
            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."

            Comment


            • #81
              Originally posted by Dingo View Post
              rohrer01



              I suppose that somebody has to be on the losing side of every bet.

              The lifetime risk for type 1 Diabetes is 1 in 100, but if you have one affected family member your risk can be as high as 1 in 10. That's not so different from Scoliosis.

              Joslin Diabetes Center (affiliated with Harvard Medical School)



              Sounds pretty genetic right? Not so fast.

              Study Of Human Pancreases Links Virus To Cause Of Type 1 Diabetes

              In most cases these children probably have a genetic susceptability to a particular virus. Or looked at another way a virus may have evolved a mechanism to overcome the defense offered by a particular gene, or gene combination. It's possible that in the not too distant future a vaccine will eradicate the virus that triggers Type 1 Diabetes.

              Nobody knows what causes Scoliosis. The fact that some families are hit particularly hard by AIS means a lot less than many people in the general public might think.

              You might find this abstract from 2008 interesting.
              Case Study of identical twins discordant for Scoliosis.
              Haven't we discussed this before....?? I have given you perfectly legitimate reasons for MZ twins not being 100% concordant and so has Pooka1. Why keep beating a dead horse? (Sorry Pooka!)
              Be happy!
              We don't know what tomorrow brings,
              but we are alive today!

              Comment


              • #82
                I think I asked a pretty legitimate "stupid" question about hormone activity and scoliosis progression. I didn't mean to start the same debate over again.
                Be happy!
                We don't know what tomorrow brings,
                but we are alive today!

                Comment


                • #83
                  Originally posted by rohrer01 View Post
                  This may be a dumb question, but since you mentioned the surge of hormones at adolescence upregulating or downregulating the mutated gene product, could hormone therapies during adulthood "trigger" the same response and cause the scoliosis to progress?

                  I ask this question because both of my curves have progressed over the past two years +/-5* and the situation during these two years were:
                  1. Chiropractic treatment (very intensive bone crunching in the scoliotic regions)
                  2. My daughter had a baby and lives with us, so more lifting
                  3. Fertility treatments with several hormones or hormone altering drugs (mulitple shots and pills each cycle)

                  Originally posted by rohrer01 View Post
                  I think I asked a pretty legitimate "stupid" question about hormone activity and scoliosis progression. I didn't mean to start the same debate over again.
                  Those are good questions. I'd need to learn more about bone metabolism and how hormones affect various components. But certainly, HRT and menopause could affect the curve in someway because of the action it has on bone. Hmm...

                  On a semi-related note, I just sort of glanced through this thread. I need to look up the scoliscore. I can't watch videos at work. But someone mentioned it about how researchers seem to only focus on adolescence and ignore adults. That is a very important point that does get overlooked. AIS patients go on to become Adult IS patients. Spinal maturity only slows progression to a crawl.

                  Comment


                  • #84
                    Originally posted by rohrer01 View Post
                    I think I asked a pretty legitimate "stupid" question about hormone activity and scoliosis progression. I didn't mean to start the same debate over again.
                    I thought that was a super question. I hope the bone doctor takes a whack at it. I suspect you are on to something real.
                    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."

                    Comment


                    • #85
                      ignore list

                      Rohrer01

                      Haven't we discussed this before....?? I have given you perfectly legitimate reasons for MZ twins not being 100% concordant and so has Pooka1.
                      To be honest I put Pooka on my ignore list months ago. I see that she is posting but I have no idea what she is saying.

                      BTW you are correct, gene expression is one theoretical explanation that might explain why MZ twins are discordant. But for quite a few reasons I feel comfortable betting against that hypothesis. It certainly didn't work out that way for Multiple Sclerosis.

                      April 29th, 2010: MS Study Suggests Key Role of Environmental Factor in the Disease
                      "Even with the very high resolution at which we sequenced the genomes of our study participants, we did not find evidence for genetic, or epigenetic differences that explained why one sibling developed the disease and the other did not," says the lead author of the study, Sergio Baranzini, PhD, associate adjunct professor of neurology and a member of the Multiple Sclerosis Research Group at University of California, San Francisco.
                      In most cases heredity is a poor explanation for why children and young adults become sick. When kids get sick something happened to them.

                      In older people heredity or natural gene expression starts to make more sense.
                      Last edited by Dingo; 05-20-2010, 03:01 PM.

                      Comment


                      • #86
                        Originally posted by Dingo View Post
                        It certainly didn't work out that way for Multiple Sclerosis.
                        Non sequitor.
                        Last edited by Pooka1; 05-20-2010, 03:15 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."

                        Comment


                        • #87
                          Originally posted by skevimc View Post
                          On a semi-related note, I just sort of glanced through this thread. I need to look up the scoliscore. I can't watch videos at work. But someone mentioned it about how researchers seem to only focus on adolescence and ignore adults. That is a very important point that does get overlooked. AIS patients go on to become Adult IS patients. Spinal maturity only slows progression to a crawl.
                          I'm pretty sure that was me. They treat you very carefully when you are a child, then when you turn 18, you get dumped. I think a scoliscore would be valid to give to anyone who has scoliosis no matter what age. Then give it to all the kids, of whatever age group they decide, who have a strong family history whether they have scoliosis or not (or if they can develop a cost effective versionk, just test all the kids, like they vaccinate all the kids). I think the younger the better, personally. Do it as a preschool screen, then they would likely know already who to watch and who doesn't need watching. It would be a good preventative tool and people like me, who are screened and missed in school, wouldn't get overlooked and therefore treatment could get started earlier.
                          Be happy!
                          We don't know what tomorrow brings,
                          but we are alive today!

                          Comment


                          • #88
                            Originally posted by Dingo View Post
                            Rohrer01



                            To be honest I put Pooka on my ignore list months ago. I see that she is posting but I have no idea what she is saying.
                            While Pooka1 might be a little bit, okay a lot, edgy (no offense to you Pooka1) when she gets frustrated, she has some very valid things to contribute. She does her research, too, especially when it comes to MZ twinning.

                            There was something you said about someone has to be on the losing side when I said I believed scoliosis to be genetic. There really are no sides here. If everyone looked at every angle instead of trying to prove the other wrong, we might actually find the culprit. The only losers are the ones with the disease.
                            Be happy!
                            We don't know what tomorrow brings,
                            but we are alive today!

                            Comment


                            • #89
                              Reading all of this

                              Now that I am almost back to sanity, I have been reading through this topic.I find it fascinating. But I have conerns that are more partical than theory at this time. Since the debate is raging, what do you do with our children in terms of intiating them into the great unknown of possibly having their own children deal with AIS? Since my mother had AIS and went to an Orthopod in 1940 and did a form of PT, we all thought she was fine. At 86, the scoliosis is coming back to haunt her. My mother in law had both K and S and was very bad at the end. All of my 4 daughters have some form with the twins the worst. I have it as well. So what is their and my future? What is the best research that is going on? I did a check for clinical trials at NIH but didn't find any good matches for us. Thanks.

                              Comment


                              • #90
                                the next generation

                                twinsmom

                                In my humble opinion our children are the last generation of children in the western world who will suffer from Scoliosis. In another 20 years or so Scoliosis will only exist in the history books.

                                November 18, 2008: INAUGURATION OF A WORLD-LEADING MUSCULOSKELETAL DISORDERS LABORATORY

                                With all these advances, Dr. Moreau considers that “we are now, for the first time, in the exceptional position of being able to foresee the eradication of the disease in the very near future with the development of the first drugs within ten years' time.”
                                Not only do I have strong reason to believe that Scoliosis is not caused by heredity but in the future there will be drugs/gene therapies/etc. to treat and probably cure it. The future is very bright. There is no reason for your children to worry about passing Scoliosis onto their kids.
                                Last edited by Dingo; 05-20-2010, 06:21 PM.

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