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March 1977

Congenital Erythropoietic Porphyria

Author Affiliations

Harvard Medical School Boston, MA 02115 ROBERT G. HAINING, MD Harborview Medical Center Seattle, WA 98104 THOMAS R. KINNEY, MD Children's Hospital of Philadelphia Philadelphia, PA 19104

Am J Dis Child. 1977;131(3):366. doi:10.1001/archpedi.1977.02120160120022

Sir.—The picture of the month in the June 1975 issue of the Journal concerned itself with a case of congenital erythropoietic porphyria. The discussion suggested the use of a topical light-screening cream for the management of the photosensitivity associated with this disease. Another therapeutic agent for the management of the photosensitivity—the use of orally administered beta-carotene (Solatene)-may be more effective. Although beta-carotene is used most often in the therapy of erythropoietic protoporphyria,1 there have appeared two reports of the successful use of oral beta-carotene in congenital erythropoietic porphyria, resulting in significant improvement in the patients' photosensitivity.2:i

We have administered beta-carotene to two additional patients with congenital erythropoietic porphyria. One patient, a 9-year-old boy (patient of T. R. K.), had a significant reduction in number and severity of his skin lesions and has been able to increase his sun exposure while receiving therapy (180 mg/day). Beta-carotene has not altered

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