Mrs Claudette Medefindt, head of science for Retina South Africa, does not let anything stop her from trying to create a better future for those who have been diagnosed with degenerative retinal diseases.
Mrs Medefindt, who is over 70 years old, works as a full-time volunteer for the organisation, which has a branch located at Helvetia House in Edenvale.
She was diagnosed with Retinitis Pigmentosa (RP) at the age of five years old and has been a volunteer for over 30 years.
“I did not know I had a vision problem until my parents took me to an eye specialist. When I was growing up I was always known as the child with ‘that’ eye condition,” said Mrs Medefindt.
When Mrs Medefindt was a child, she said, her and the other neighborhood children would play in the neighbourhood until it got dark.
“We played a lot of games but I was usually the first one to get caught, because of my poor night vision,” said Mrs Medefindt.
Mrs Medefindt said she grew up with the disease and learnt how to adapt her life around it.
Only in her late teens and early 20s was Mrs Medefindt affected by RP badly.
Mrs Medefindt said she used to play hockey for the first league Eastern Transvaal U/21 team until her eyesight prevented her from playing.
“I was able to play for the second team but I am not second team material,” said Mrs Medefindt.
Although RP prevents Mrs Medefindt from driving, she does not let this stop her from enjoying life.
Mrs Medefindt said because she is an artistic person she was able to keep busy. When not doing volunteer work she used to make pottery and took up painting eight years ago.
Mrs Medefindt also teaches yoga from her home studio and has been doing so for the last 30 years.
As a counsellor for Retina South Africa, Mrs Medefindt knows the importance of a strong support structure around oneself once diagnosed, especially with children.
She said her husband has been extremely supportive and was there for her.
Mrs Medefindt said many people think RP is extremely rare and they will never be affected by it and when they are diagnosed they are in disbelief
“About one out of five people have a chance of a carrier of the gene,” said Mrs Medfindt.
“When I help a family I try and inform and empower the parents. I help them go through denial, depression and guilt. I offer them assistance and a means of support,” said Mrs Medefindt.
She said one of the frequent questions she receives from parents is, what can my child do?
“I simply tell them to let their child follow their passion and be happy,” said Mrs Medefindt.
“RP is caused by the breakdown of cells that lie on the outer edges of the retina. It is a genetic condition and other family members may also be affected by it,” said Mrs Medefindt.
Mrs Medefindt said there are three main ways RP can be passed to a child:
- From a parent to a child.
- When an x-linked mother is a carrier of the gene and passes it on to her son.
- When two parents are recessive gene carriers, the child has a 25 per cent chance of being diagnosed with RP.
“In today’s world there is a lot of technology to helps someone who suffers from a retinal diseases,” said Mrs Medefindt.
Mrs Medefindt said there a number of free apps for cellphones and computer programs to help people.
Mrs Medefindt said although progress is being made on cures for RP and that the use of stem cells is being tested, one of the main challenges is getting people tested and finding treatment.
“The cure may not help me, but I feel we have to leave the world a better place. That is all we can hope for. I cannot sit back and do nothing,” said Mrs Medefindt.
“People need to be proactive and be part of the solution,” she said.
For more information about Retina South Africa visit their website at www.retinasa.org.za
