World Retina Week: the dangers of retinitis pigmentosa

SEPTEMBER is World Eye Care Month and includes World Retina Week from September 21 to 27.

World Retina Week is observed in over 40 countries to create awareness of the progress towards treatment for retinal genetic conditions through scientific research. The remarkable progress being made in the fields of gene therapy, stem cells and artificial retinas makes the dream of treatment for as yet incurable blindness an exciting reality.

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Retinal conditions such as macular degenerations and dystrophies, retinitis pigmentosa, and other rare conditions cause loss of vision in over 40 million people worldwide and a probable 150 000 South Africans.

International clinical trials, to find effective treatments, are showing great promise and Retina South Africa is determined to bring these promising trials to South Africa.

Retina South Africa is a patient run, voluntary organisation with branches in Gauteng, Eastern Cape and Western Cape. Its main objectives are to raise funds for research to find a cure for retinal blindness and to support those suffering from retinal degenerative diseases.

“If we can bring promising treatments for retinal blindness to South Africa, we have the potential to save over a million blind years in our young people affected by these genetic conditions. The researchers are doing their part, exploring exciting new solutions to stop the advance of vision loss. These include gene therapy, artificial retinas, stem cells and many other innovative approaches. We need to do ours, to identify the thousands of young South Africans who could benefit from these exciting new initiatives. We need the support of all South Africans to make the dream of treating retinal blindness a reality in our lifetime.” said Claudette Medefindt, head of Science for Retina South Africa and deputy president of Retina International.

Retina SA has partnered with the Human Genetics Division of the University of Cape Town headed by Professor Raj Ramesar. Their work in identifying retinal genes is world renowned and they are the only genetics unit in Sub-Saharan Africa capable of this cutting edge science.

Two of their current projects are headed by Lisa Roberts and Stacey Moses.

Lisa Roberts’ PhD project involves new generation genetic testing of indigenous African patients with retinal diseases, towards identifying the genes involved in this population group.

The project was kick started with Roberts spending six weeks at the prestigious National Eye Institute in Washington USA, in collaboration with Professor Anand Swaroop and his team.

Dr Johann Baard has just completed his MSc thesis, in which he investigated macular degeneration (both the juvenile onset Stargardt form, and the age-related form) in the indigenous African populations.

Finally, Stacey Moses is working on a “disease in a dish” model of retinitis pigmentosa for her PhD; using induced pluripotent stem cells to study the biology of mutations in a dominantly inherited gene causing retinitis pigmentosa [RP]. Patients affected by this type of RP have a 50 per cent chance (on each pregnancy) of having an affected child.

As early diagnosis is imperative, Retina SA has partnered with Spec Savers who are offering free retinal screenings to the public during World Retina Week. Please contact your nearest SpecSavers to make an appointment.

While the search is on for a cure, many parents live with the frustration of watching their children losing their vision.

Retina SA is actively involved in fund-raising projects to raise money for research and genetic testing for patients. They annually host events such as the popular “Dis-Chem Ride for Sight” and the SMS campaign where you can SMS the word “DREAM: to 38267 to donate R10 towards finding a cure for retinal blindness.

You can also purchase a raffle ticket to win a Mazda 2 sponsored by the Fury Motor Group.

Visit www.retinasa.org.za to participate.