Prevention vs Treatment
On the group we have been talking about prevention vs treatment for Scoliosis which opened up a whole new discussion thread, I wanted to share those thoughts and chats here, we discussed gene therapies, where does Scoliosis come from, do we know yet?
The discussion started as a result of the social networking campaign that is circulating for breast cance to raise awareness about breast cancer by asking women to update their status with one simple word: the color of their bra. The email message going around stated "some fun is going on.... just write the color of your bra in your status. Just the color, nothing else. And send this on to ONLY girls no men .... It will be neat to see if this will spread the wings of cancer awareness.
So, the question is, why is Scoliosis more common in females than males, what is the cause and why is treatment more common than the prevention of Scoliosis?
"Could it be that it affects more women than men because of our puberty patterns such as women's periods every month, women also grow up quicker than men?
I also think a lot of illnesses are treatment rather than prevention for many reasons, the fact that Scoliosis is still an unknown cause today does not help, I know we are getting closer to finding a gene but we are not there yet, they believe it to be CHD7 and that it comes from the Mother’s side, however, there are no other known members of our family to have had Scoliosis, I was the first.
I have a page about this Scoliosis Gene Therapy
It is difficult to have prevention treatment when they are not sure where it comes from yet, I know we have bracing and exercises but if these exercises are not done daily you may fall back into curving again but I believe that if your curve is going to curve then nothing will stop this, exercising is good and we should all do it, but what about when we are older how would we manage 13 hours of exercise a day or more?
They are also using DNA in the states now to follow curve patterns and diagnose.
Genetic Factors
Several studies demonstrate a genetic component in the development of scoliosis. Population studies have reported and increased incidence in families of patients with idiopathic scoliosis compared to the general population. In one study, daughters of women with IS had a 27% prevalence of scoliotic curves greater than 15º. Studies of twins presenting with scoliotic curves showed a prevalence of scoliosis in 73% to 92% of monozygotic twins compared to 36% to 63% of dizygotic twins. Despite the accumulating evidence of a genetic etiology, the exact inheritance pattern, genes, and gene products causing scoliosis remain unknown. The most likely inheritance pattern is multifactoral. Genomic screening and statistical linkage analysis could provide new research avenues to help identify different genes responsible for scoliosis.
Hormonal Factors
Melatonin deficiency has been proposed as a cause of scoliosis because removal of the pineal gland (primary site of melatonin secretion) resulted in scoliosis in chickens. In addition, nighttime melatonin secretion in patients with progressive scoliosis decreased 35% compared with patients without scoliosis progression. Growth hormone has also been suggested as having a role in scoliosis development. Rapid progression of scoliosis has occasionally been reported in patients taking growth hormone. Interestingly, melatonin and growth hormone have similar but opposite diurnal patterns of secretion.
Richard's Thoughts
"The Campaign re-opened an issue I have thought about off and on over the years. Both the Scoliosis Association and Susan G. Komen for the Cure Foundation put a great deal of emphasis on awareness and early detection. Treatment for both has been, and still is "barbaric" in many ways (and as we all know it is not a "cure"). Both often have major self-esteem issues, and both disproportionately effect females (scoliosis being 10 to 1 based on most available statistics).
Does that mean that scoliosis is a "women's health issue"? In many ways I think so. Furthermore, it often seems to me that the medical community puts more emphasis on "treatment" than prevention with women's health issues (I discussed this with a college friend via a facebook message, and she told me that this has been a hot topic with women's groups for several years, and things are just starting to change).
It is well known that most cases of scoliosis are idiopathic (of unknown cause). It is also known that there are hereditary factors, and as I noted that it disproportionately effects females. My questions are WHY does it disproportionately effects females, and in that same line why are a small percentage of males effected? I have never seen any clear cut answers to these questions. Would more attention by the medical community to prevention answer these questions? Would males effected by this, being "on the inside" becoming general advocates to "women's health issues" further move things along on this matter?"
Rachel's Thoughts
"You have raised some points that I have thought about alot lately. What are you going to do with the information you are gathering? Both my daughters have scoliosis, one more so than the other, at the moment. I don't yet know if my son will develop it, he is much younger.
I have wondered if the preportion of females to males developing scoliosis has something to do with combination of X and Y chromosomes. I know that in America some researchers have recently found, from studying genetic databases (I think?) made up from records kept in Utah, mutated genes or mutated gene loci, (something like that) - don't know enough myself. These researchers might know more now. I have been told that also that there is a biomedical research company that can test the likelihood of progression of scoliosis using saliva, they have so many samples that they can do a test by comparing the DNA of patients with the DNA of those in their databank who have mutated genes.
As to scoliosis being a "women's issue" I have until recently thought that it might be considered as such but now I am not so sure. Since my daughters have developed idiopathic scoliosis, I have come across many people both male and female who have scoliosis. My nephew and my neice from different siblings, both have been diagnosed with scoliosis recently. We don't know of anyone else in the older generations of our family who have it. I did go to the Women's Library in London in October, a very small library, but they have very little information and no books or articles about scoliosis specifically. Being that it is more common in females and that mothers tend to be the main health carers, I feel that a women's library should have some information that would be of use to women or girls affected by scoliosis.
As to preventative medicine, I agree that there is certainly not enough. My older daughter has been badly let down both by me and her first orthopaedic consultant. I am against this "watch and wait" treatment, and am hoping that vigorous exercise will help both my daughters. They have had schroth type physiotherapy treatment. I think that every child who develops scoliosis should have the opportunity to try intensive physio as soon as they are diagnosed. I think what is difficult for a lot of parents is that many don't actually see the first signs that their daughter's, or son's, back is changing. Many daughters at about the age of 8 or 9 don't want their mother to see them with no top/shirt/blouse on. There is also no information or education from health professionals when children are about 8 years old. There is no screening in schools or by school nurses. I think scoliosis is something that is being diagnosed more these days, but there is still not enough education.
Children and their parents get plenty of information from schools and health centres about drugs, sex etc but, between the ages of 7 and 11, which are the most common years for onset/diagnosis I think, there are no warnings to parents that their children could develop scoliosis. Many children do not experience pain and do not see the shape of their own back when they bend. I think it is something that mothers and fathers should be educated about when their child enters primary or junior school, so that they can see what to watch out for. I found out that my daughters' secondary school had a workshop/programme about scoliosis about 4 or 5 years ago.
What really makes me sad is that parents like me watch their daughters or sons beautiful body changing and gradually or swiftly becoming deformed, and while they are generally not too bothered by it initially, there's the ultimate dark cloud in the future which will rain down on them in the form of horrible back pain, and disability."
Llweyn's Thoughts
"I was like you in thinking that I was the first in my family with this disease. It wasn’t until I started doing genealogy and was in contact with a distant cousin that I discovered another member in the family tree and it was on my mother’s side. Having said this, I do know that the men on my father’s side were always known to have “bad backs” but it was thought to do with their occupation (farmers, stone masons, cotton weavers, etc.).
I think that until they come up with the cause, in order to prevent, treatment will be the only known way of dealing with this disease. But as in any disease, the early the detection the better the treatment is, and usually less severe. As to why females are more affected than males, I don’t think they have discovered the answer to that. It could be hormones, growth pattern, genes or body chemistry. Who knows what the real answer to this is, as in any disease that affects one more than the other. The best we can do is get early treatment/detection and take part in the various studies that are going on in your region or country. The more information the scientist or medical have, the better they can determine the cause.
As for the present, the best we can do for ourselves is to be informed and inform others by creating public awareness. For some of us, it is a very physical disease that the public can see, for the rest of us, it is more of an invisible disease because we look balanced (until we wear a swimsuit or take our clothes off), thus the public is unaware. I know that the treatment we received as youngsters affect our self-esteem, which makes it hard to stand up and make the public aware, but until we do there will be less awareness, less early detection and less research done.
I thank you, Simone, for giving us this website, message board and your continued research into information to better serve us."
Scott's Thoughts
"Just a personal opinion but it would bug me a bit if scoliosis were classified as a "women's health issue" because some could read into that phrase that scoliosis doesn't affect males or perhaps that the male subset of people with scoliosis is small enough that they don't matter, etc.
I do understand the question and why you're bringing it up. I just haven't thought about it enough to create a better phrase".
The discussion started as a result of the social networking campaign that is circulating for breast cance to raise awareness about breast cancer by asking women to update their status with one simple word: the color of their bra. The email message going around stated "some fun is going on.... just write the color of your bra in your status. Just the color, nothing else. And send this on to ONLY girls no men .... It will be neat to see if this will spread the wings of cancer awareness.
So, the question is, why is Scoliosis more common in females than males, what is the cause and why is treatment more common than the prevention of Scoliosis?
"Could it be that it affects more women than men because of our puberty patterns such as women's periods every month, women also grow up quicker than men?
I also think a lot of illnesses are treatment rather than prevention for many reasons, the fact that Scoliosis is still an unknown cause today does not help, I know we are getting closer to finding a gene but we are not there yet, they believe it to be CHD7 and that it comes from the Mother’s side, however, there are no other known members of our family to have had Scoliosis, I was the first.
I have a page about this Scoliosis Gene Therapy
It is difficult to have prevention treatment when they are not sure where it comes from yet, I know we have bracing and exercises but if these exercises are not done daily you may fall back into curving again but I believe that if your curve is going to curve then nothing will stop this, exercising is good and we should all do it, but what about when we are older how would we manage 13 hours of exercise a day or more?
They are also using DNA in the states now to follow curve patterns and diagnose.
Genetic Factors
Several studies demonstrate a genetic component in the development of scoliosis. Population studies have reported and increased incidence in families of patients with idiopathic scoliosis compared to the general population. In one study, daughters of women with IS had a 27% prevalence of scoliotic curves greater than 15º. Studies of twins presenting with scoliotic curves showed a prevalence of scoliosis in 73% to 92% of monozygotic twins compared to 36% to 63% of dizygotic twins. Despite the accumulating evidence of a genetic etiology, the exact inheritance pattern, genes, and gene products causing scoliosis remain unknown. The most likely inheritance pattern is multifactoral. Genomic screening and statistical linkage analysis could provide new research avenues to help identify different genes responsible for scoliosis.
Hormonal Factors
Melatonin deficiency has been proposed as a cause of scoliosis because removal of the pineal gland (primary site of melatonin secretion) resulted in scoliosis in chickens. In addition, nighttime melatonin secretion in patients with progressive scoliosis decreased 35% compared with patients without scoliosis progression. Growth hormone has also been suggested as having a role in scoliosis development. Rapid progression of scoliosis has occasionally been reported in patients taking growth hormone. Interestingly, melatonin and growth hormone have similar but opposite diurnal patterns of secretion.
Richard's Thoughts
"The Campaign re-opened an issue I have thought about off and on over the years. Both the Scoliosis Association and Susan G. Komen for the Cure Foundation put a great deal of emphasis on awareness and early detection. Treatment for both has been, and still is "barbaric" in many ways (and as we all know it is not a "cure"). Both often have major self-esteem issues, and both disproportionately effect females (scoliosis being 10 to 1 based on most available statistics).
Does that mean that scoliosis is a "women's health issue"? In many ways I think so. Furthermore, it often seems to me that the medical community puts more emphasis on "treatment" than prevention with women's health issues (I discussed this with a college friend via a facebook message, and she told me that this has been a hot topic with women's groups for several years, and things are just starting to change).
It is well known that most cases of scoliosis are idiopathic (of unknown cause). It is also known that there are hereditary factors, and as I noted that it disproportionately effects females. My questions are WHY does it disproportionately effects females, and in that same line why are a small percentage of males effected? I have never seen any clear cut answers to these questions. Would more attention by the medical community to prevention answer these questions? Would males effected by this, being "on the inside" becoming general advocates to "women's health issues" further move things along on this matter?"
Rachel's Thoughts
"You have raised some points that I have thought about alot lately. What are you going to do with the information you are gathering? Both my daughters have scoliosis, one more so than the other, at the moment. I don't yet know if my son will develop it, he is much younger.
I have wondered if the preportion of females to males developing scoliosis has something to do with combination of X and Y chromosomes. I know that in America some researchers have recently found, from studying genetic databases (I think?) made up from records kept in Utah, mutated genes or mutated gene loci, (something like that) - don't know enough myself. These researchers might know more now. I have been told that also that there is a biomedical research company that can test the likelihood of progression of scoliosis using saliva, they have so many samples that they can do a test by comparing the DNA of patients with the DNA of those in their databank who have mutated genes.
As to scoliosis being a "women's issue" I have until recently thought that it might be considered as such but now I am not so sure. Since my daughters have developed idiopathic scoliosis, I have come across many people both male and female who have scoliosis. My nephew and my neice from different siblings, both have been diagnosed with scoliosis recently. We don't know of anyone else in the older generations of our family who have it. I did go to the Women's Library in London in October, a very small library, but they have very little information and no books or articles about scoliosis specifically. Being that it is more common in females and that mothers tend to be the main health carers, I feel that a women's library should have some information that would be of use to women or girls affected by scoliosis.
As to preventative medicine, I agree that there is certainly not enough. My older daughter has been badly let down both by me and her first orthopaedic consultant. I am against this "watch and wait" treatment, and am hoping that vigorous exercise will help both my daughters. They have had schroth type physiotherapy treatment. I think that every child who develops scoliosis should have the opportunity to try intensive physio as soon as they are diagnosed. I think what is difficult for a lot of parents is that many don't actually see the first signs that their daughter's, or son's, back is changing. Many daughters at about the age of 8 or 9 don't want their mother to see them with no top/shirt/blouse on. There is also no information or education from health professionals when children are about 8 years old. There is no screening in schools or by school nurses. I think scoliosis is something that is being diagnosed more these days, but there is still not enough education.
Children and their parents get plenty of information from schools and health centres about drugs, sex etc but, between the ages of 7 and 11, which are the most common years for onset/diagnosis I think, there are no warnings to parents that their children could develop scoliosis. Many children do not experience pain and do not see the shape of their own back when they bend. I think it is something that mothers and fathers should be educated about when their child enters primary or junior school, so that they can see what to watch out for. I found out that my daughters' secondary school had a workshop/programme about scoliosis about 4 or 5 years ago.
What really makes me sad is that parents like me watch their daughters or sons beautiful body changing and gradually or swiftly becoming deformed, and while they are generally not too bothered by it initially, there's the ultimate dark cloud in the future which will rain down on them in the form of horrible back pain, and disability."
Llweyn's Thoughts
"I was like you in thinking that I was the first in my family with this disease. It wasn’t until I started doing genealogy and was in contact with a distant cousin that I discovered another member in the family tree and it was on my mother’s side. Having said this, I do know that the men on my father’s side were always known to have “bad backs” but it was thought to do with their occupation (farmers, stone masons, cotton weavers, etc.).
I think that until they come up with the cause, in order to prevent, treatment will be the only known way of dealing with this disease. But as in any disease, the early the detection the better the treatment is, and usually less severe. As to why females are more affected than males, I don’t think they have discovered the answer to that. It could be hormones, growth pattern, genes or body chemistry. Who knows what the real answer to this is, as in any disease that affects one more than the other. The best we can do is get early treatment/detection and take part in the various studies that are going on in your region or country. The more information the scientist or medical have, the better they can determine the cause.
As for the present, the best we can do for ourselves is to be informed and inform others by creating public awareness. For some of us, it is a very physical disease that the public can see, for the rest of us, it is more of an invisible disease because we look balanced (until we wear a swimsuit or take our clothes off), thus the public is unaware. I know that the treatment we received as youngsters affect our self-esteem, which makes it hard to stand up and make the public aware, but until we do there will be less awareness, less early detection and less research done.
I thank you, Simone, for giving us this website, message board and your continued research into information to better serve us."
Scott's Thoughts
"Just a personal opinion but it would bug me a bit if scoliosis were classified as a "women's health issue" because some could read into that phrase that scoliosis doesn't affect males or perhaps that the male subset of people with scoliosis is small enough that they don't matter, etc.
I do understand the question and why you're bringing it up. I just haven't thought about it enough to create a better phrase".
