Meet Claudette Medefindt
I am Claudette and I am Deputy President and Membership Coordinator at Retina International and also Head of Science at Retina South Africa.
I am also an RP patient and have been involved with Retina International since 1984. I was a delegate to the then International RP Association congress held in Helsinki in 1984 and it was at this congress that Professor Shomi Battacharia announced that he had localised a gene associated with X linked Retinitis Pigmentosa [RP] and I was hooked. Hooked into the science of retinal degeneration and hooked into understanding the genetic mutations causing my own loss of vision- Dominant RP. This began a life-long passion to understand as much as possible about the research and to find treatments for RP and related retinal degenerative conditions.
Together with my brother Gordon Cousins and other affected South African families we established what is now Retina South Africa – a strong and vocal patient group that has worked tirelessly for the past 35 years to advocate for and fund genetic research in South Africa and to ensure equal access to future treatments.
Retina South Africa is now under the chairmanship of James Cape and I am so happy that the organisation is acknowledged as an important role player in the fight against retinal blindness and has the support of ophthalmologists and geneticist in both private and public institutions.
I have remained on the National board of Retina South Africa and write the popular Retina SA ENews – a quarterly overview of research news in a language that patients can understand. www.retinasa.org.za
I am the secretary to the Scientific and Medical Advisory Board of Retina South Africa and a trained peer counsellor. I have also been a full time volunteer for Retina South Africa for the past 35 years and have kept active on the management committee of Retina International.
I am also a mother of two sons and now the proud grandmother of two young girls.
I really believe in the power of yoga and I have to say that I attribute my still usable but restricted central vision in part to 36 years as a yoga practitioner and teacher; and also to a healthy diet – the carotenoid and anti- oxidant rich food and supplements that I continue to take daily.
My vison loss has not kept me from my art and I work in both water colours and pastels.
My latest water colours incorporate my own Vision Quest - a depiction of my visual loss in subtle and expressive works.
I am a big fan of the iPhone and iPad and use these and clever apps to make life easier. I also travel extensively and I am a great believer in the power of the symbol cane.
I really believe that my greatest assets are my sense of humour and my devoted husband Norman. Uber and the high speed South Africa suburban Gautrain have given me a new sense of independence, and are giving Norman a well-deserved break from driving me everywhere.
My motto is “Be present in each moment and be grateful for every breathe”.