Dr. Carolina Reato Marçon
The number of people living with albinism in Brasil is significant. The dermatology department of Santa Casa de Misericórdia Hospital was facing a high incidence of advanced skin cancers and actinic damages in albino patients. This department decided to set up a program to provide effective interventions for the prevention and early management of skin cancer, and to provide emotional and social support to albino patients.
The Pró-Albino program was launched in 2010 at the Santa Casa de Misericórdia Hospital in São Paulo, by the Department of Dermatology and the Department of Ophthalmology. Its objective is to propose strategies for:
– reducing the physical repercussions of albinism through the prevention and early detection of dermatological diseases that may occur in the albino patients,
– the diagnosis of ophthalmological alterations,
– the conduct of appropriate interventions.
The program has a multidisciplinary group and include, in addition to Dermatology and Ophtalmology, teams on Psychology, Speech therapy, Ocular Physiotherapy and Social Assistance.
In addition, all the albino patients and their family receive information leaflets on the pathology and on the measures to prevent damages.
Around 280 patients are involved in the program.
In Brazil, no data is available on the genetic profile of albinism. Genetic analysis would provide a general understanding of the incidence of albinism, would help health professionals to give appropriate advice to the patient. It would also permit an early diagnosis of syndromic forms of the disease and avoid severe complications.
The grant is needed to perform the genetic analysis of the patients involved in the program (at the beginning on a pilot scale) and to make the technology available in the hospital. This would develop the molecular research on this disease in Brazil.