Eyes that see...
By Aloyma Ravelo Photos: Miguel Guzmén Ruiz
This article has been provided for general information purposes only and is not intended as medical advice or recommendation of usage. The treatments and procedures as described are legal in the Republic of Cuba and no representations are made as to the legality or validity in Canada or any other jurisdiction. If you are interested in any of the treatments or procedures described, please consult with your Doctor.
Cuba's National Retinitis Pigmentosa Program has 17 years of experience, not only treating patients with this vision illness, but also perfecting a system of prevention for those at risk of suffering from it. Retinitis Pigmentosa, without proper care, leads inevitably to blindness. It is that cruel. The late eminent Cuban Professor Orfilio Peláez made an essential contribution, not only for Cuba but for the entire world, for the treatment of this visual illness called revitalizing surgery. lts goal is to improve the function and nutrition of the retina‘s photo-receptive cells and stop the disease.
Peláez was still a student when a close friend of his, with problems of night vision, was diagnosed with this illness.
The ophthalmologist told him bluntly: "The disease you are suffering from will leave you blind. Get a dog or a helper." His friend committed suicide and Peláez swore to dedicate his life to ophthalmology and ﬁght the terrible disease.
"The National Program for the Treatment of Patients with Retinitis Pigmentosa began in 1989", says Dr. Maritza Herrera, assistant director of the program. Multidisciplinary groups and scientists were trained and many resources in materials and equipment were dedicated to this humane task.
Today the work is continued at the different centres of the National Retinitis Pigmentosa Network. This national program, run for the last five years by Dr. Obel García, is found in all the provinces of the country, including the Isle of Youth. Its specialized attention includes inquiries, diagnosis and treatment of this visual illness and the development of clinical, basic and epidemiological research of retina dystrophies. Among the program‘s goals are improving the patients’ health, ascertaining the number of cases within all ages of the population, identifying asymptomatic Retinitis Pigmentosa carriers through family studies and establishing genetic and clinical characterization in Cuba.
After 17 years of work, Dr. Herrera tells us about his experiences: "The work has been fruitful, especially in the interdisciplinary treatment of the disease. The relation between the different health levels, mainly the primary level, has allowed us to know the incidence and prevalence of this illness in Cuba. lt has also allowed providing attention to 4 123 patients and 2 435 families in their provinces."
"Since retinitis is a disease consisting of a number of clinical, genetic and ophthalmologic conditions, it is necessary to continue research in the area of basic sciences, epidemiology and molecular biology, which is what we are dealing with right now," said the expert. For the 2007-2009 period they plan to undertake a national epidemiological survey of all affected families with electrophysiological and molecular genetic studies in coordination with the National Medical Genetics Centre.
Cure for kids
Diverse foreign authors indicate that more than 50% of patients evidence the first symptoms before the age of 30, and it is exceptional to ﬁnd the disease in those over 50 years. Infants account for 9%, reaching 23% for children 3 years old.
ln the Cuban survey, 49% of patients from both sexes were diagnosed before age 10. Twenty-nine percent had an occurrence of first symptoms between ages 10 and 19. The high number of diagnosed cases during the ﬁrst decade of life, with concomitant timely attention, is because children in families having a member with retinitis have an exhaustive diagnosis with an ophthalmologic examination guaranteed. This applies equally for those with hearing deﬁciencies, other disabilities and groups at high risk of suffering this illness.
It is very important for the family to be aware of children's’ attitudes during the early hours of the night and their participation in games between 6 and 7 pm. In little ones, parents should observe behaviours such as fear of darkness, which could be manifested with tremors, crying, irritability, tachycardia, or, simply, desire to go to sleep early. This situation is catalogued as belonging to a "very calm child" concealing rejection of activities and nocturnal games.
The Cuban experience showed that, in children diagnosed with this illness before age 10, their main symptoms are: fear of darkness, early bedtime and difﬁculty picking up toys during the late afternoon-night period.