Dr. Carolina Reato Marçon
Epidemiological data on albinism in Brazil are not available, but the number of people living with albinism is substantial. The dermatology department of Santa Casa de Misericórdia Hospital recorded a high incidence of advanced skin cancers and actinic damage in albino patients. As a direct result, the 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 objectives include:
– Reducing the physical ‘scars’ of albinism through the prevention and early detection of dermatological diseases that occur in albino patients,
– Diagnosing ophthalmological changes,
– Conducting appropriate interventions.
The program has a multidisciplinary group which, in addition to Dermatology and Ophthalmology, offers Psychology, Speech therapy, Ocular Physiotherapy and Social Assistance.
In addition, all albino patients and their families receive information leaflets on the pathology and on measures to prevent skin damage.
Around 280 patients are involved in the program.
In Brazil, no data is currently available on the genetic profile of albinism. Genetic analysis would provide a better understanding of the incidence of albinism and would help health professionals give targeted advice to the patient. It would also ensure an early diagnosis of syndromic forms of the disease and avoid severe complications.
The grant would fund the genetic analysis of the patients involved in the program (funding a pilot project) and make the technology available in hospital. It would advance the molecular research on this disease in Brazil.