Outdated Medical Info on the Web

Medical web sites with outdated information on Down Syndrome are common on the web. The following letter was written to the webmaster of one of them way back in 1999.

Dear Webmaster,

I need to tell you that your information on Down Syndrome is hopelessly out of date.

The characteristics of Down Syndrome are the result of overexpression of gene products on the 21st chromosome. Since there are many genes, the result is a cacophony of metabolic errors, many of which have already been identified and are treatable. The treatment consists of supplementation with specific nutrients to counteract the gene over-expressions.

Children born today with Down Syndrome, whose parents put them on a targeted nutritional intervention protocol have a vastly improved outlook from the dreary prognosis you described.Mary, 1999, age 7

As a case in point, my daughter with Down Syndrome is seven years old. She can read. She can do 1st grade arithmetic. She has memorized the names (in order) of the 27 books of the New Testament and yesterday was busy teaching them to my two year old. She is responsible for helping with the laundry, she sweeps floors, she is adept at washing dishes. Her health is excellent and she experiences upper respiratory infections at the same rate as the other children in my family. In play, she participates in group games and contests with her age-mates and thrives on the competition.

Yesterday we had a visitor in our home who observed Mary work and play for some hours. Then she said, “I thought she had Down Syndrome.” We replied, “She does.” Our visitor then wondered, “But she’s not retarded…?” No she’s not.

She asked, “How do you do that?”

The answer is that Mary and thousands of other people with Down Syndrome are benefiting from targeted nutritional intervention, and in Mary’s case she is benefiting from a neuro-developmental educational program.

Without this information, your site is instilling dread into parents when it could so easily be imparting life-giving hope.

Your site on Down Syndrome mentioned Prevention. But all you said was that the mom should get an amnio. That’s not prevention. That’s extermination!

For information on prevention, you need to mention the work of Dr. James et al. whose research has demonstrated that a deficiency of the vitamin folic acid is implicated in the conception of children with Trisomy 21.

Please provide updated information on Down Syndrome. I suspect that your report was written by a medical provider who is still operating on information that was learned in medical school years ago. The recently completed Human Genome Project has totally changed our understanding of the gene products of the 21st chromosome, and your provider may not be conversant with that new information.

Regards,

Miriam Kauk

3 Responses

  1. [...] wrote a letter similar to what I wrote eight years ago to a different webmaster. Her letter is better. And maybe they will pay attention [...]

  2. Hi Miriam,
    I have a 6 year old son with Down Syndrome who is delayed in speech and in other areas. I am very interested in what neuro-developmental education is and also what targeted nutritional intervention is. If you can help please let me know, thanks. Olga

  3. There is a quite a bit on this site about targeted nutritional intervention, here is a place to start. Then look over in the left sidebar, toward the bottom, for the articles under the biochemistry heading.

    For neuro-developmental education… well this link will get you started. Read tthe articles there. There is more here.

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