This is what Farrarmere resident Claudette Medefindt said inspired her to dedicate her life to advocating for people who are visually impaired.
She has the same type of retinal vision loss that people with Usher Syndrome have (a disease that affects both hearing and vision), except she has no hearing problems.
She has been part of Retina South Africa for 35 years and has had a dream, together with the organisation, to make cures and treatments available to all South Africans affected by genetic retinal blindness.
Ahead of International Deaf/Blind Awareness Week, on June 27, Retina South Africa had been highlighting the importance of testing and treatment for people with Usher Syndrome.
Medefindt said clinical trials to replace the defective gene in the most severe form of Usher Syndrome are being run overseas and they need every Usher patient to step forward to register with Retina SA.
They also need the support of the community, to raise funds to bring these trials to South Africa, Medefindt added.
She left on Sunday, July 3, to attend the Retina International World Congress in Taipei for two weeks.
“I will be presenting a paper on the progress that our country has made towards finding the exact gene mutation causing retinal blindness in South African families,” she explained.
The congress will be attended by over 500 patients from 26 countries and the latest research into clinical trials and treatments will be presented by international research scientists.
The 71-year-old Medefindt has been head of Retina South Africa for past 25 years, 10 years after its inception.
“Retina South Africa was born in Benoni 35 years ago and our national office was here for many years,” she said.
“We would like to thank all the Benonians who have supported us over the last 35 years, particularly the Rotary and Lions clubs who continue to marshal our annual Ride for Sight in February every year.
“I have been nominated to serve on the executive committee of Retina International, but this will be my last term.”
She feels that she needs to step back and allow younger patients to fulfil the role of mentoring and assisting new patient organisations to find their feet.
As for people who come into contact with deaf and blind people, Medefindt advises: “Ask if they need assistance and don’t assume they do.
“Do not push or pull people where you think they want to go.”
“Remember that our hearing and or vision may be affected, but our mind is fine; do not talk past deaf or blind people to their companion.”
“Face them squarely and speak a little slower than normal, but do not shout, many people have some hearing and can lip-read.”
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