The Iron Disorders Institute Guide to Hemochromatosis by Cheryl Garrison

Author:Cheryl Garrison
Language: eng
Format: epub
Publisher: Sourcebooks
Published: 2009-06-14T16:00:00+00:00

Bridging Yesterday to Today

Unnecessary suffering and deaths of loved ones angered and motivated all of the individuals in these stories. Common to all of them was the desire to protect future generations by raising awareness about hemochromatosis. They faced long hours, little money, and a vast sea of need, but their motivation was too strong for them to give up. One volunteer expressing frustration about trying to inform physicians blurted out a phrase that would be repeated many times: “I feel like a gnat in a hurricane!”

Despite the tremendous odds, plans were carried out that would forever change the face of hemochromatosis. High priority was given to partnering with the CDC to educate physicians and to producing literature with medically reviewed content. Confidence was high that if these two priorities were met and successfully carried out, that unnecessary pain, suffering, and premature death because of hemochromatosis would be an exception rather than the rule.

A congressional budget line item funding hemochromatosis research and a partnership with the CDC and NIH was achieved. A panel of hemochromatosis experts was formed to serve as medical and scientific oversight for content in educational literature. The Annals of Internal Medicine published a multipage supplement on hemochromatosis in 1999 that addressed diagnosis, treatment, and management. The IDI was given permission to photocopy the supplement to mail it out to healthcare providers. Volunteers and staff spent countless hours photocopying, collating, stapling, stuffing envelopes, and sticking mailing labels on envelopes to more than seven thousand healthcare providers in the Southeast (the Carolinas, Georgia, Alabama, Florida, Tennessee, and Virginia). Follow-up calls (and in some cases, personal visits) were made to ensure that the providers received, read, and found the material helpful. Achieving this objective was tedious but rewarding.

Through this pilot outreach program, the IDI learned the following: physicians are too busy to read long articles on topics that may not seem germane to their patient population. The attitude that hemochromatosis was a rare disease affecting older men prevailed because most of the physicians still had never diagnosed a case.

In a visit to the office of a key clinical investigator, Laura Main and Cheryl Garrison spotted the unopened envelope buried deep in a pile of “must read” materials. The physician admitted that he wanted to read the material but lacked the time. From these findings, IDI sought the help of its Medical and Scientific Advisory Board to develop a snapshot of the symptoms, reference ranges, diagnosis, management, genetics, diet, and resources for clinicians. In late 2000, IDI produced the first of its kind Physician Hemochromatosis Reference Chart, containing at-a-glance illustrations of diagnostic algorithms, treatment, diet, genetics, and resources.

The 1996 gene discovery confirmed that hemochromatosis is real and common; evidence also proved that hemochromatosis could be deadly. This reality helped to shape the late 1990s and launched us into the next period in the history of hemochromatosis: the way it is now.

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