MCS Referral & Resources professional outreach, patient support and public advocacy devoted to the diagnosis, treatment, accommodation and prevention
MCS Referral & Resources
professional outreach, patient support and public advocacy
devoted to the diagnosis, treatment, accommodation and prevention
of Multiple Chemical Sensitivity Disorders
Press Release -- For Immediate Release, Monday 14 November 1994
For more information, call Albert Donnay, 410-448-3319
Persian Gulf Syndrome May Be Porphyria:
Veterans With Red Urine Should Be Tested
MCS Referral & Resources, a Baltimore-based organization devoted to increasing awareness of multiple chemical sensitivity disorders, announced today at a meeting of the Persian Gulf Expert Scientific Committee that all of the diverse neurological, dermatological, and psychological symptoms being seen in Persian Gulf veterans with supposedly "unexplained" illness may be caused by one or more types of porphyria. These rare but well-established medical conditions apparently have not been considered as a possible explanation for Persian Gulf Syndrome by the Departments of Defense or Veterans' Affairs or any of the expert panels convened to date--all of which so far have failed to come up with a diagnosis or even a case definition.
The porphyrias are a group of mostly inherited and incurable enzyme deficiency disorders which are aggravated by exposure to chemicals and other environmental and physiological stressors. As documented in over 300 peer-reviewed articles spanning more than 100 years of research, symptoms of porphyria depend on the enzyme deficiency involved and may include any combination of multiple chemical sensitivity (evidenced by intolerance of chemical odors), heavy metal sensitivity (evidenced by intolerance of dental amalgams and jewelry), photosensitivity (evidenced by neurological and dermatological reactions to sunlight), skin sensitivity (evidenced by diverse reactions to various stressors), abdominal pains, muscle and joint pains, chronic fatigue, neuropsychological complaints, and--most characteristically--pink to red/dark urine.
MCS Referral & Resources urges the Departments of Defense and Veterans' Affairs to immediately begin asking about and recording these symptoms of porphyria in their Persian Gulf Registry examinations. Any patient reporting even a few of these symptoms--but especially red/dark urine in combination with abdominal pains--should promptly be given the very specific laboratory tests developed by the Mayo Clinic and others to detect and distinguish among the various forms of porphyria. These include 24-hour urine and stool tests to detect excess porphyrin excretion and blood tests to detect specific enzyme deficiencies. Independent physicians who began using these tests with civilian MCS patients earlier this year report that more than 60% are testing positive for one or more types of porphyria.
2326 Pickwick Road, Baltimore, MD 21207, 410-448-3319, fax 448-3317
Albert Donnay, the executive director of MCS Referral & Resources, believes that most Persian Gulf veterans with "unexplained illness" also will be shown to have one or more types of porphyria, and most likely Intoxication Porphyria. "This is the only acquired form of the disease, the only type known to be caused as well as aggravated by chemical exposure, and the only type associated with multiple enzyme deficiencies." The inherited types of porphyria also may prove significant, however, especially in those cases in which the children of Persian Gulf veterans have begun to display similar symptoms. While there is no cure for porphyria, those with the disease--like others with multiple chemical sensitivity--should be counseled to avoid aggravating exposures to sunlight, heavy metals, and chemicals (especially unnecessary medications).
Unlike the more controversial diagnosis of multiple chemical sensitivity, which the Department of Veterans' Affairs (VA) refuses to accept, VA officials cannot claim ignorance of porphyria. The VA agreed in July 1993 to a recommendation from the National Institute of Medicine Committee studying Agent Orange exposure to compensate Vietnam Veterans for another form of porphyria called Porphyria Cutanea Tarda (PCT). While this recommendation was based solely on a literature review, the VA has since checked for and found 100 cases of porphyria reported in its Agent Orange Registry (equivalent to 71 per 100,000). Although this is already several times the expected rate, the actual rate is undoubtedly much higher, since the Registry's medical examination--like that developed for Persian Gulf veterans--still does not recommend any specific medical history questions or diagnostic tests for porphyria.
It is all the more remarkable, therefore, that the 100 porphyria cases found in Vietnam veterans were not reported in any large clusters but in small numbers by dozens of different VA hospitals around the country. This suggests that there are numerous physicians within the VA system who already know how to recognize and diagnose porphyria. Are any of these doctors with porphyria experience now seeing Persian Gulf veterans? Are any again noticing the symptoms of porphyria and going beyond the VA's standard diagnostic protocol to test for it? And how many cases of porphyria have already been listed but overlooked in the Persian Gulf Registry? Only the Department of Veterans' Affairs can answer these questions.
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Clarifications and Corrections Noted Post-Release:
1) The reference to over 300 peer-reviewed articles on porphyria refers only to articles with "porphyria" in the title; the databases of the National Library of Medicine and the National Cancer Institute list over 6,000 articles on the subject of porphyria (all published since 1966, when the first of these databases was set up). The number published prior to 1966 is unknown, although the oldest known references date to the 1870s.
2) The signs and symptoms of porphyria, including pink to red/dark urine, often are seen only intermittently (when the disease is aggravated by environmental and/or physiological stressors).
3) Intoxication Porphyria may not be the only acquired (non-inherited) form of the disease. At least one form known to be inherited, Porphyria Cutanea Tarda, also may develop in individuals without any inherited porphyria-specific enzyme deficiencies after exposure to particular chemicals (such as hexachlorobenzene).
4) The VA reported to MCS Referral & Resources on 16 November 1994 that no cases of porphyria have been reported to the Persian Gulf Registry (from database of approx. 17,000 examinations).
Last Modified: 7/4/98