AN EYE, the organ of sight- that’s what it means- for the uninitiated.
However, the same eye or eyes poses a huge challenge that could result in blindness or develop Keratoconus (KC) for one.
Keratoconus is a degenerative, non-inflammatory disease of the eye that causes the normally spherical cornea to progressively thin and protrude creating an irregular conical shape.
The disease remains remains undiagnosed for the majority of patients in South Africa, due to:
• No/limited access to eye care services (especially in semi-urban and rural areas).
• A lack of knowledge of parents, care-givers and teachers about keratoconus (leaving patients/families fearful and feeling unsupported).
• Limited diagnostic skills of many practitioners (sadly, one still encounters large numbers of children who, despite being to health facilities, have not been correctly diagnosed due to the lack of skills of the health workers at many facilities)
• Inadequate equipment to diagnose keratoconus at health care facilities.
As a result entrepreneur and academic Tate Madlala, Dr Vanessa Moodley and Swedish born Laurent Schneitter, decided to establish The Keratoconus Foundation in South Africa, since 2017, whose fundamental work is to conscientious fellow South African’s on what causes this unfortunate disease, that is unheard of.
The foundation’s mission is to provide a comprehensive support system for patients living with keratoconus (KC) to ensure that no one is blind or visually impaired because keratoconus is not diagnosed or appropriately treated.
During interview with both Madlala and Moodley in Rosebank, they poured their hearts-out indicating the disease, unfortunately has no colour or race, since it can affect everyone from an early age.
“I have for a while been burdened by the increasing numbers of children I encountered, who have advanced keratoconus but no financial resources to pay for treatment, so I guess that really was the trigger of the foundation”, says Dr Moodley, Senior Lecturer at UKZN and now appointed as the Chairperson of the Education Sub-Committee of the African Council of Optometry.
Another bone of contention is funding.
“Whilst there are several options to treat Keratoconus, the major challenge remains funding, because many children are not diagnosed in time that could technically mean they become blind at school,” they both alluded.
In advanced cases, corneal transplant becomes the only or option to salvage vision, but often this is not the possibility due to patient not affording the cost of finding or importing a donor cornea.
“It’s a mission to find a cornea donor in SA, hence it’s an exhausting exercise to import from the likes of US, because when we do find one out of 10, it becomes expensive to operate,” says Dr Moodley.
This then means we have to prioritise young kids from the age of five-upwards. Yes, we would like to operate adults, especially the grannies and mkhulus, but as pointed-out sadly, budget constraints does not allow., continued Madlala.
Fortunately, some donors such as private Doctors, have managed to come on board by providing and availing themselves to provide services that are worth over R90 000 for free and at times medication. Public hospitals do offer such operations from R30 000 but due to long waiting period this could end up badly for the child who desperately needs attention.
“Un(fortunately) the Doctors are based in Johannesburg that means we have to scrape or fund raise to get the patient to get here in Joburg and arrange accommodation as well. Its taxing but it has to be done,” indicated the anxious Madlala.
Our objective is to catch them young and diagnose at an early stage because many a children, end up living school, they alluded.
“As a foundation, apart from very limited resources- decided to apply multi-faced approach i.e. research, training and advocate throughout the country by getting in contact with our fellow practitioners to provide services, and get the message as much as possible to the public.
This would help to mitigate and provide early treatment to avoid huge op cost,” says Dr Moodley.
Since the establishment of the Keratoconus Foundation South Africa, only last year they’ve seen traction and results of their hard work in the form of private Doctors coming on board and this year, managed got three specialists to provide aid to children.
Only two varsity students have been added on the waiting list this year already -due to overwhelming enquiries.
Posed on how or where they draw children, they approach their colleagues at hospitals, varsity clinics or through the treatment application form found on their website and though their news-letter.
Having hosted their inaugural conference last year at Emperors Palace, over 30 specialists from all nine provinces were provided with ‘refresher courses’ on how to detect and diagnose corneal.
Kamogelo Makgalo (15) boy from Pretoria, had keratoconus which severely affected his vision. But after the op, he can now “see can now play, study and see his family”.
Lyndelle Taibos, was the first child to receive rigid contact lenses and one year supply of solutions from the Foundation.
Busisiwe Mbanjwa from KZN was also the first recipient of a corneal graft through the Foundation.
These are some of the accolades and stride the foundation has made -but the more funding they acquire, the sooner more kids will receive treatment at an early stage.
This means an organisation like KC is long overdue considering the growing list of patients requiring assistance.
For more information and donation send email to: firstname.lastname@example.org or visit keratoconusfoundationsa.org
Image (KZN, Health-MEC Dr Sibongiseni Dhlomo, Keratoconus Foundation South Africa founders Dr Vanessa Moodley & Tate Madlala, and a smiling recipient of corneal op- celebrating World Sight Day at UKZN).