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Scoliosis
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Date: Thu, 17 Oct 1996 17:25:05 -0400
From: Rich Lethin
I've recently set up an electronic mail list for discussing scoliosis.
Scoliosis is a curvature of the spine that is usually discovered in adolescents. Untreated, it can grow in severity, with its later-in-life impact on the rib cage impeding critical organs and distortion of the spinal cord causing crippling neurological complications. A substantial fraction of the World's population has scoliosis. The most common form of scoliosis is still "idiopathic", meaning "unknown cause." There are treatments for scoliosis, some not always successful. Another treatment is major orthopedic surgery.
On our computers at the MIT AI lab, we have a very popular email list (called "bmt-talk") for talking about bone marrow treatments, started by a member of our lab for whom this treatment was sucessful. The issues involved in scoliosis, while perhaps not as stark as cancer and its treatment, are certainly serious and compounded with a subtlety which suggests that a mailing list discussion could be of some benefit.
I created the scoliosis list to support more exchange among patients, parents, researchers, and doctors. Parents and patients face difficult and expensive treatment options for scoliosis such as major surgery or long term bracing and in this situation are particularly vulnerable to being sold alternative/"fad" treatment options which can let the condition grow worse, making later treatment more risky or ineffective. Specialists have limited time to explain the options to parents, and medical journals are often inaccessible both physically and conceptually. Some parents/patents might do the leg work to be informed by high quality research. Discussing their conclusions on the list could benefit other parents. Patients who have experienced different treatments could offer their impressions and information about the success of the treatment. Finally, many sufferers from scoliosis live in remote places on the Earth; electronic mail can bring them closer to resources which might be unavailable in their community.
Studies in the 70's demonstrated that scoliosis has a strong genetic component. Now, in the 90's, the technology of molecular biology has allowed scientists to isolate the genes responsible for the predisposition to many other diseases, syndromes, and cancers. As far as I know, no one's yet located a "scoliosis gene", partly and possibly because research indicates there are a number of interrelated genetic causes. But scoliosis genes are being studied vigorously by many scientists. The list clearly cannot substitute for quality peer-reviewed medical and scientific journals, however, light pointers and interpretations in messages sent to the scoliosis list can lower some of the barriers to patients being informed by these high quality results rather than be victim to heavily-marketed "fad" pseudoscentific treatments.
I have scoliosis, and was treated for it as a teenager with major "spinal fusion" surgery, which was successful. Based on my experience, I know that my family would have benefitted from email discussion when we discovered that I had the condition. It was hard to get consistent recommendations and advice. However, my immediate motivation for setting up the list was the recent discovery that the one of the most conspicuous web presences for scoliosis promotes deceptive alternative treatments, like nutritional therapy. My hope is that the list can serve as a forum for criticism of quackery.
This project requires getting qualified folks to subscribe. Doctors and researchers might be reluctant to subscribe for fear of a flood of email. Because the list has just started and there are currently few subscribers, this is not an immediate concern; in the long run to address this concern the mailing list is configured with a "digest" version, which aggregates any daily volume into a single message sent unintrusively and late at night. The direct feed is also available for people who prefer a conversational interaction with the list. The list is moderated to limit the impact of any errors on our computer mail server and to keep messages on topic and useful.
I encourage you to join or to bring the list to the attention of anyone who suffers from scoliosis or who specializes in the field. A world wide web page with instructions about the list is at:
http://www.ai.mit.edu/scoliosis/scoliosis.html
Rich Lethin ```
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