Retina South Africa East Cape Branch

Retina SA (RSA) is a registered non-profit organisation dedicated to finding the causes of and treatment for all people affected by inherited retinal disorders.Retina SA is the only organisation in South Africa fighting inherited retinal blindness. RetinaSA is a patient run organisation bringing treatments and cures for retinal blindness through scientific research. We empower people with low vision to be productive members of society through information-sharing, training and counselling. This is made possible through various fundraising initiatives. Current focus is to identify 300 new families which will result in significant research contribution by identifying unique South African genes,resulting in reduced gene test cost. Genetic testing is the prerequisite requirement for any current treatment option.

Top 3 projects

1. identification of patients affected by retinal vision loss

2. clinical and genetic testing to ensure patient access to treatment options and disease management

3. skills development for visually impaired people to develop an independent lifestyle.

List of needs

1. Contributions towards funding the purchase of a Diagnostic Panel (the diagnostic panel will help in the identification of the genetic mutations causing retinal blindness in South African families)

2. Funding to conduct genetic tests for young people in the Eastern Cape who have been identified with an inherited blindness and who will stand the chance to benefit and have access to treatment.

3. Service Costs – transport / telecommunications.

Statistics

In the Eastern Cape, 1900 young people under the age of 25 are blind as a result of an Inherited Retinal Disease.

10 000 people are carriers of a single copy of a defective retinal gene, placing them at risk

125000 – 150000 people in SA are visually impaired by a retinal disease – Age Related Macualr Degeneration.

A success Story

Jaco Smit, a young man from Humansdorp was referred to Retina SA when he was 16 years old in grade 10. Jaco had recently been diagnosed with an inherited retinal blindness known as Retinitis Pigmentosa. This retinal blindness causes, night vision loss, tunnel-like vision, poor light/dark adaptation, loss of contrast sensitivity. His reduction of vision resulted in him being faced with reading and writing challenges unable to copy from the chalkboard and overhead projectors, due to the glare from bright light.

He sometimes would appear clumsy when he tripped over things, bumped into to objects or people because of his loss of field of vision. He felt lonely, misunderstood, was labelled a poor lacklustre learner by his teachers, encountered teasing and bullying in the school-ground and in his community.

This talented, intelligent young boy, a rugby player, excellent athlete, guitar and piano player, had dreams and goals to become the best that he could. Retinitis Pigmentosa was robbing him of hope of ever reaching any of his dreams and goals.

Jaco dropped out of school due to the fact that the Education Department did not accommodate learners with sight problems in his school. Frustration and fear forced him to take a step against his wishes. Society failed him, he became introverted, developed a lack of confidence, low self-esteem, and a loss of self-worth.

Retina SA joined hands with Jaco some ten years ago. Through the organisation’s education, counselling and training and mentoring programs, Jaco has developed an independent lifestyle that has equipped him to be emotionally, socially and financially integrated into society.

Retina SA has helped Jaco in reaching his goal of participating in first class athletes. He competes in both the abled bodied and people with disability track events. Through the efforts of Retina SA, Jaco receives a sponsorship which enable him to train daily with the Eastern Cape Sports Academy at the NMU. In 2014, Jaco competed in his first SA National Athletics Championships for People with Disabilities, winning gold in the 1500m and silver in the 800m. He has gone onto winning 2 more silver medals in the 800m, 3 bronze and 1 gold in the 400m and 1 silver in long jump. Jaco has been knocking on the door to be internationally recognised as an athlete.

2017 saw Jaco make a breakthrough into the international qualifying standards, being ranked internationally at number 10 in his category. He will now be on the short list for participation in World Athletic Championships and the Para-Olympics.

Jaco has also been enabled to further his studies and has obtained an office administration certificate. He uses the mentoring skills gained from Retina SA to mentor young people within his community. He has become a skilled motivational speaker as a result of being trained to assist at Retina SA workshops and presentations.