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Porphyria Educational Services


 

PORPHYRIA EDUCATIONAL SERVICES BULLETIN

Vol. 2 Special Edition No. 1  ~ Feb13, 2000
FOCUS:  The Need to Verify Facts

            With the rapid expansion of technology and communication today'saccessibility to information is vast. This technology has expanded to thehealth field as well. 

            In an article on "PC World Online" entitled "Is the Web Bad for Your Health?"  it cited that that "last year, an estimated 26 million Americans--the vast majority of them women--logged on to the growing number of health-related Web sites in search of answers to what ails them. Many found information that helped them make important decisions about their health care. Others received advice that was outdated, misleading, or even dangerous."

            For the porphyria patient, this realization is even more dramatic and vital for the patient's own well being. 

When I was first diagnosed with porphyria I traveled a great distance to a well-known medical center. At that time there were no porphyria websites.  At this vast medical complex their vertical files in the patient education center and library had only a few items from their own medical center newsletter and some photocopies of materials from the American Porphyria Foundation.  It was skimpy to say the least.

            I looked at the materials that were photocopied for me and sent with me from the medical center.  I honestly have to say that I had far more questions thatthere were any answers.

 

            The things I had in hand contradicted what I had read previously in the so-called medical Bible, Harrison's Textbook of Medicine  and the standard medical school textbook, The Metabolic Basis of Inherited Disease.  These two books werethe backbone of authentic porphyria medical information. So I really questionedsome of the literature that I had photocopied from a vertical file without anyverification on them.  Some materials were from a known organization, but did not contain any names of authors.

        Several years later while in a rush and having slacken in my verification of facts, I was truly duped.  Not by the person who gave me a medical commentary from a journal or the abstract taken from the National Library of Public Medicine.

        I learned the hard way that a person always needs to verify every piece of information they receive, even that which appears to be from a reliable source, such at the internet Pub Med site. 

        After receiving the material which was distributed at a porphyric support group meeting, and knowing that the commentary had been discussed fully by another porphyric's physician, I only scanned it.  I did not bother checking out the authors that were listed and verifying it against the same information on the internet.

        I had accepted it in good faith. The person distributing the information had received hjis copy from his physician. Both of them had received it in good faith.

        But someone else who had printed the commentary from the internet had altered the material contained within the document.  This alteration could have had devastating effects for some porphyrics. Based upon the information and the

discussion of the commentary at the porphyria meeting I, along with others,

in good faith embarked upon using a specific medication outlined in the commentary.  However, after sharing this information with a larger porphyriccommunity it was pointed out that the commentary and abstracts were notauthentic, but altered material with misleading information. Luckily themedication proved to be good for many of us, and is still considered to be safe for "healthy" porphyrics without any other medical conditions and without certain porphyria connected symptoms. But what about those who did not meet the criteria? It could be devastating for some, however there are no studies yet to prove that point.

        The bottom line here is never takes anyone's word on the authenticityof a printed document, a drug, or other medical advice.  Always verify theinformation and discuss anything and everything with your own personalc are physician.

         The same goes for the abundance of Health Sites now appearing on the Internet.  Some may be very good, and some are bad and dangerous in fact.

But how does one know the difference?

            The American Medical Association is so worried that patients might be getting bad information online that it has decided to launch its own health information site early this yearm according to more of the article appearing on "PC World Online."  Heading this is the retired U.S. Surgeon General, Dr. C. Everett Koop.   I personally view this as a most welcomed practice.

            Today porphyrics are coming to the Internet and the email in abundance. They are just average folks with nary a recollection of Biology 101 in college, if indeed they even went to college.These porphyric patients comes to the Forums and personal porphyria websitesas well as to the multitude of medical websites that are available.

            Many of the websites are very good and the information is reliable, butthere are those who could run into bad news. Porphyrics need to remember thatit is only information and all information needs to be verified.  Furthermore,it is there to read, and to not diagnose or treat you directly.  Diagnosis andtreatment must come from your own personal care physician.

        Today's internet  currently has more than 20,000 health-related sites, including online drugstores. Most of these  sites go largely unmonitored.  Questions have been raised about the accuracy of medical information on the internet.

         However, none of this is to say health sites are bad news. . Medical professionals and experts who caution against misleading health information on the internet also often cite  the internet  for its potential to empower patients to learn about their conditions. Specially cited is that the internet allows patients  to make more informed decisions about their health care.

            The bottom line for all porphyrics and others as well is to remember that what you are reading is information only. It is up to you to verify the accuracy, and before undergoing any medical treatment to thoroughly discuss it with your personal physician.

        Note the disclaimers that appear on every medical website. They are they fo a reason. Be safe, be smart and verify everything. Ask questions and double check everything, especially medications and what is contained within them and their side effects.

Diana Deats-O'Reilly CEO
Porphyria Educational Services