September and October is World Eye Care Month and includes World Retina Week which is held from September 18 to 24.
According to Ms Claudette Medefindt, head of science for Retina South Africa, World Retina Week aims to create momentum in scientific, government and civil structures
Ms Medefindt said World Retina Week is observed in over 42 countries.
“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 cannot be identified by researchers,” said Ms Medefindt.
She said there are a number of rare conditions and causes that lead to vision loss in over 40 million people worldwide
“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 database, that will connect patients to the correct researchers,” said Ms Medefindt.
Patients can join the international database by going to www.myretinatracker.org. It allows patients to remain anonymous if the wish.
Ms Medefindt said the website is monitored by the Foundation Fighting Blindness
“Most of these genetic retinal conditions are extremely rare, affecting from 1 in 3 000 to 1 in 30 000 of the population. To find enough patients to treat will require international collaboration and My Retina Tracker is ideal: the patient holds the power,” said Ms Medefindt.
She said 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.
Retina South Africa has teamed up with the Division of Human Genetics at the University of Cape Town, headed by Professor 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,” said Ms Medefindt
Ms Medefindt appealed to all south Africans to support their vision quest at www.retinasa.org.za.
“We estimate that over 17 000 young South Africans will lose their sight if they do not receive treatment,” said Ms Medefindt.
