MAVERICK CITIZEN OP-ED
Through a lens darkly: Pioneering a vision for improved eye care in South Africa
In the whole of South Africa there is only one ophthalmological confocal microscope, based in Gauteng. To successfully combat corneal disease, we need at least one in each of the nine provinces. The cost of these specialised tools is in the region of R1.2-million each.
Freddie van Rensburg earns a living as a Specialist Wellness Counsellor and an Addictions Counsellor, working in his own practice. He is also the author of two books: Life Anon: A 12-step guide to life for non-addicts (available in the Daily Maverick shop), and The First Layer: Work through the 12 steps in 21 days. When he is not busy recording and editing his spirituality podcast, Meet me in the field, you can find him working on helping people with low vision in his capacity as a Director of Eyes2Eyes. His current focus, with regard to the latter, is to ensure that sufficient funds are generated during The Heydenburg Summer Concert, an open-air classical music concert.
Just before Christmas in 2018, Amanda Seccombe was winding down after another busy year running her own online clothing boutique, when, without warning, she felt extreme discomfort in her eyes. Ten days later, her world had turned into a confusing foggy haze, and not only was seeing made near-impossible, trying to do so was intensely painful.
The initial diagnosis was that Amanda suffered from allergies which could clear up after three to four weeks of treatment. When that didn’t happen, she went to see specialists and was given diagnoses ranging from possible ulcers to a viral infection in her eyes. Soon Amanda was not only losing her sight, but the ability to care for herself and lead a dignified life.
Family intervened and took her to Tygerberg Academic Hospital where professors delivered the devastating news that her corneas were under attack from a water-borne bacteria called Acanthamoeba Keratitis – and it was systematically devouring the corneal tissue.
With the diagnosis made, there was a faint light at the end of the tunnel. This was the beginning of a long and gruelling journey.
The diagnosis meant that a round of treatment would have to be completed before the best and ultimate treatment, bilateral cornea transplants, was possible. A selection of drops was prescribed, one of which was something akin to swimming pool acid. Imagine starting each day with something like that being dripped into your eyes, greeting the day with wraparound dark glasses while stumbling through your dark home, with the curtains drawn. Then having a rigid regime of drops applied every 30 minutes for the rest of the day until your last dose at 10pm and, exhausted from pain and worry, eventually going to bed for a restless night’s sleep.
Today, Amanda has 20/20 vision in her left eye for approximately eight to 10 hours a day. The hope is to have sight restored to both eyes at some stage in the future. The extent of the damage to her eyes means that custom-fit scleral lenses need to be fitted on top of the transplanted corneas she received from two young American donors.
Through research, Amanda has discovered that her corneal blindness is one of the biggest causes of avoidable blindness globally. Unfortunately for many sufferers of corneal blindness in South Africa, the prognosis remains unavoidable blindness, simply because the appropriate diagnostic interventions and awareness of the importance of organ donation are in short supply.
“I hope that no one has to go through the prolonged agony I have gone through,” Amanda says. “My journey was one of extreme physical pain and mental anguish. My hope is that my story will ease the burden of others battling eye disease and low vision in South Africa.”
To give meaning to her experience, Amanda founded Eyes2Eyes – a non-profit organisation registered in South Africa to raise money to purchase a confocal microscope for diagnostic purposes in ophthalmology in the Western Cape.
Worldwide, every centre of excellence in eyecare in the developed world has a confocal microscope. The instrument is an essential diagnostic tool in eyecare that facilitates high resolution imaging of all five layers of the cornea. In the whole of South Africa there is only one ophthalmological confocal microscope, based in Gauteng. To successfully combat corneal disease, we need at least one in each of the nine provinces. The cost of these specialised tools is in the region of R1,2-million each.
Eyes2Eyes is also committed to raising awareness about corneal transplants in South Africa and debunking the myths around cornea tissue procurement. Currently, corneas are imported, mostly from the USA, at a cost of about four times that of locally procured ones.
The organisation also aims to raise awareness about the need for custom-fit scleral lenses for patients battling cornea disease. Bafflingly, the state does not supply these for conditions like keratoconus, a bulging of the cornea, to patients needing them for their visual rehabilitation. Medical aids also do not cover these costs. This can be the last step in the process for visual rehabilitation – and yet the current protocol is to advise patients to seek laser surgery.
In one month alone, Eyes2Eyes received enquiries from 15 young patients needing scleral lenses. The impact of severe low vision on their lives is enormous. All of them expressed frustration at not being able to study, fear for their future employment prospects and their inability to participate socially because of their visual challenges.
Eyes2Eyes has managed to negotiate a 30% discount on scleral lenses for their clients, but the cost of one lens is generally in the region of R8,000. These lenses are currently imported and customised according to the topography of the client’s eyes. They need support to fulfil their vision.
Eyes2Eyes is actively advocating for change, and avoidable blindness is at the very top of their list of objectives. DM/MC
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