World Retina Week this month

World Retina Week runs from September 18 to 24 and is observed in over 42 countries.

The aim is to create momentum in scientific, government and civil structures, to hasten the miraculous journey from blindness to sight for millions of people worldwide, with retinal blinding conditions.

The remarkable progress that has been made in the fields of gene therapy, stem cells and artificial retinas will be lost if patients with these rare conditions can’t be identified by researchers.

Retinal conditions such as macular degenerations and dystrophies, retinitis pigmentosa, stargardt disease 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 has now ensured that South African patients can join the international data base that will connect patients to the correct researchers.

The portal www.myretinatracker.org is anonymous, free and leaves the control in the hands of the patient.

The site is monitored by Foundation Fighting Blindness USA and researchers are vetted by them before the patient is invited to contact the research institute.

“Most of these genetic retinal conditions are extremely rare, affecting from one in 3 000 to one in 30 000 of the population,” said Claudette Medefindt, head of Science for Retina South Africa.

“To find enough patients to treat will require international collaboration and My Retina Tracker is ideal, the patient holds the power.”

Patients who have had a gene test to determine their precise gene mutation will have the best chance of being included in these promising clinical trials.

More than 270 genes have already been linked to these sight stealing conditions and Retina South Africa has partnered with the division of human genetics at the University of Cape Town, headed by Prof Raj Ramesar, to find gene mutations unique to South African populations.

This world class team of gene hunters has already made significant genetic discoveries and their work is unique on the African continent.

Retina South Africa is a patient-run NPO, with branches in Gauteng, the Eastern Cape and the Western Cape.

Their main objective is to raise funds for research, to find treatments for retinal blindness and to ensure that all South Africans have access to these miracles.

“We estimate that over 17 000 young South Africans will lose their sight if they do not receive treatment; that is over one million blind years that we could save,” said Medefindt.

Medefindt appeals to all South Africans to support the vision quest at www.retinasa.org.za.

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