Porphyria cutanea tarda in children: epidemiological study of a rare disease in Argentina.

Introduction: Porphyria cutanea tarda (PCT), the most common porphyria, is caused by a decreased activity of uroporphyrinogen decarboxylase (UROD). PCT is gener ally sporadic, but in about 25% of cases, the disease is transmitted as an autosomal dominant trait (familial PCT). Few cases of PCT with o...

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Published in:Medicina (Buenos Aires) Vol. 85; no. 6; pp. 1261 - 1272
Main Authors: Mendez, Manuel, Varela, Laura, Melito, Viviana, Buzaleh, Ana María, Parera, Victoria
Format: Article
Published: Medicina (Buenos Aires) nov/dic2025
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        atl: Porphyria cutanea tarda in children: epidemiological study of a rare disease in Argentina.
      aug:
        au:
          Mendez, Manuel
          Varela, Laura
          Melito, Viviana
          Buzaleh, Ana María
          Parera, Victoria
        affil:
          Centro de Investigaciones sobre Porfirinas y Porfirias (CIPYP), Universidad de Buenos Aires-CONICET, Hospital de Clínicas José de San Martín, Buenos Aires, Argentina
          Instituto de Investigación Hospital 12 de Octubre (imas12) Madrid, España
          Departamento de Química Biológica, Facultad de Ciencias Exactas y Naturales (FCEN)-UBA, Buenos Aires, Argentina
      su:
        Porphyria
        Juvenile diseases
        Skin diseases
        Epidemiology
        Genetics
        Argentina
      sug:
        subj:
          Argentina
          Porphyria
          Juvenile diseases
          Skin diseases
          Epidemiology
          Genetics
      keyword:
        Childhood
        Genetic-hetero geneity
        Porphyria cutanea tarda
        Precipitating-factors
        Uroporphyrinogen-decarboxylase
        Factores-precipitantes
        Heterogenei dad-genética
        Infancia
        Porfiria cutánea tardía
        Uroporfirinógeno-decarboxilasa
      ab:
        Introduction: Porphyria cutanea tarda (PCT), the most common porphyria, is caused by a decreased activity of uroporphyrinogen decarboxylase (UROD). PCT is gener ally sporadic, but in about 25% of cases, the disease is transmitted as an autosomal dominant trait (familial PCT). Few cases of PCT with onset in childhood have been reported to date. The aim was to perform a ret rospective analysis of these rare cases, including all patients diagnosed with PCT from 1977 to present, with disease onset occurring before the age of 18. Materials and methods: We analyzed 28 patients, 15 males and 13 females, ranging from 3 to 16 years old. Results: Characteristic biochemical alterations, such as elevated urinary levels of porphyrins with typical excretion pattern, high plasma porphyrin index, reduced erythrocyte UROD activity, and typical cutaneous lesions of PCT were observed in all patients. Molecular analysis revealed the genetic heterogeneity inherent to PCT, with certain variants being prominent within the Argentin ian cohort. Potential precipitating factors of the disease were also described. Discussion: This study provides a comprehensive analysis of childhood-onset PCT in the Argentinian population, shedding light on both genetic and environ mental factors contributing to the disease. We empha size the crucial need for early diagnosis, particularly in pediatric cases, and remark on the importance of genetic studies among family members to prevent the delayed recognition of PCT in high-risk individuals. Additionally, the study discusses the role of environmental factors in disease onset and the importance of carefully monitor ing drug use in PCT patients.
        Introducción: La porfiria cutánea tardía (PCT), la forma más común de porfiria, es causada por la disminución de la actividad de la uroporfirinógeno descarboxilasa (UROD). Aunque generalmente es esporádica, en el 25% de los casos se transmite en forma autosómica dominante (PCT familiar). Se han documentado pocos casos de PCT con inicio en la infancia. El objetivo de este estudio fue realizar un análisis retrospectivo de estos casos raros incluyendo todos los pacientes diagnosticados con PCT desde 1977 a la fecha, con desencadenamiento antes de los 18 años. Materiales y métodos: Se analizaron 28 pacientes (15 varones, 13 mujeres), con manifestación entre 3 y 16 años. Resultados: Se observaron alteraciones bioquímicas características, como niveles elevados de porfirinas urinarias con un patrón de excreción característico, alto índice de porfirinas plasmáticas, actividad redu cida de UROD eritrocitaria y lesiones cutáneas típicas en todos los pacientes. El análisis molecular reveló la heterogeneidad genética de la PCT, con ciertas variantes predominantes dentro de la cohorte argentina. También se describieron factores precipitantes de la enfermedad. Discusión: Este estudio proporciona un análisis com pleto de la PCT de inicio infantil en la población argenti na, destacando tanto los factores genéticos como ambien tales que contribuyen a su manifestación. Subrayamos la necesidad de un diagnóstico temprano, especialmente en los casos pediátricos, y la importancia de los estudios genéticos entre familiares para prevenir el desencadena miento de la PCT en individuos de alto riesgo.
      pubtype: Academic Journal
      doctype: Article
      src: R
    language: English
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