Keratoconus is not a life sentence — helping give back… – Daily Maverick

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“I can see, I can read! This is a new life for me — a new life is beginning” shouted bubbly young student, Khanya, as she had her custom-made scleral lenses fitted a few months ago. With the help of donations to The Eyes2Eyes Foundation, Khanya’s sight has been restored and she can now go back to college to complete her final subject.
Last year she had to drop out of college with only one subject to go as her sight rapidly deteriorated. Khanya has a degenerative eye disease called keratoconus. She had not seen the world around her through clear eyes for 10 years.
You’re not alone if you’ve never heard of keratoconus — neither had I until I joined the board of The Eyes2Eyes Foundation. I was surprised by how many people suffer from keratoconus, especially in the Western Cape. I started to learn about corneal diseases after a dear friend went completely blind rather suddenly. If you have heard of it, then chances are that you, or someone you know, have been diagnosed with it and are probably fighting a brave battle to get help.
Amanda Seccombe, Founding Director of The Eyes2Eyes Foundation, lost her sight from corneal disease in 2018. That’s when she became aware of the suffering of those unable to access care in public health for treatment of diseases like keratoconus.
After many surgeries and ongoing treatment, she is currently blessed with good enough vision to live a fairly normal life. Unfortunately, this is not the case for 90% of people in South Africa living with keratoconus and other corneal diseases. It is for this reason that we started the Eyes2Eyes Foundation, to help the most vulnerable in our communities, giving them access to world-class intervention and care.
Someone else who got a new lease on life thanks to donors to Eyes2Eyes, is 16-year-old Daniel Morta. In his mom’s words, “restoring his sight has changed his world. From being withdrawn, he’s now captain of his school chess team. This term, he got a bachelor’s pass at school.”
Keratoconus is a non-inflammatory eye condition, which causes the typically dome-shaped cornea, described as the clear window of the front of the eye, to progressively get thinner and weaker, forming a cone-like bulge. The cornea is responsible for up to 70% of your eyes’ focusing power. A distorted cornea means light cannot refract normally through this all-important front structure of your eye.
A progressive and aggressive worsening of vision is normally the first symptom. Vision becomes severely distorted, with “ghosting” of objects and people’s faces a common problem. People with advanced keratoconus cannot wear glasses or ordinary contact lenses to give them vision. While there is no known cause of the disease, patients often suffer from allergies and asthma and tend to rub their eyes a lot.
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The Eyes2Eyes Foundation’s mission is to restore sight to young children and adults living with preventable corneal blindness in the Western Cape. To prevent corneal blindness due to keratoconus, they raise funds to provide world-class technology in the form of highly customised scleral lenses. These lenses are not funded in public healthcare. Without the help of organisations like Eyes2Eyes, there is little hope of regaining sight for most of these young people.
Corneal blindness affects more than 12 million people around the globe. Eighty per cent of this is preventable. South Africa is no different, except that corneal services in our country are hugely under-resourced. For patients like Abdul, our youngest beneficiary at just eight years old, this means very long waiting times to get help, with no guarantee that the assistance they desperately need will come their way.
It is the Eyes2Eyes Foundation’s vision to deliver dignified, patient-centred eye care to the most vulnerable in our communities. No child or young adult should be denied the right to sight restoration where it is possible. The gift of sight means that children can attend school, young adults can further their studies, and parents can provide for their families and actively engage in the economy.
“Cee Jay’s journey as an independent young man, not needing my constant help to act as his eyes, is unfolding. He is so happy exploring the outdoors and was super excited to see his older sister’s face clearly,” his mom, Michelle, tells us. At 14 and already an excellent artist, Cee Jay is the second youngest patient to have received the precious gift of sight from generous donations to Eyes2Eyes.
The Eyes2Eyes Foundation launched their custom design Scleral Lens Programme at the Groote Schuur Cornea Clinic in June 2021 and hopes to expand its services throughout South Africa when funding is available. In just 16 months, 90 young patients diagnosed with advanced keratoconus have joined their programme. To date, 23 young people have had their sight restored with highly customised scleral lenses.
Amanda Seccombe says “we are in urgent need of funding to assist young patients who have been on our waiting list for a very long time now. The impact of this invisible disability is tragic. When we first meet these patients they are so grateful to finally talk to someone that understands how challenging their daily lives are. Depression is a common thread with these patients, as they face exclusion and isolation. Their education and employment opportunities are severely limited by the disease. These young lives are put on hold as they struggle with severe visual impairment or blindness.”
An example of this is 16-year-old learner, Zethu. Her keratoconus-induced vision loss was making school a real challenge. Like all Eyes2Eyes’ beneficiaries, glasses and ordinary scleral lenses could not restore her sight. Her mom says her grades in school have improved dramatically and her confidence is growing in leaps and bounds now that she can see again. She’s become totally independent and no longer relies on her mom for help.
Another patient living life to the fullest with his sight restored is Joze. Joze has very steep cones, so it took four months to adjust his lenses to get an accurate and comfortable fit. He lives in George but found his way to all his appointments in Cape Town by bus. He is studying criminal justice through Unisa. Now, with his sight restored, he doesn’t have to rely on large type and work with his face close to the computer screen, which makes studying much easier. He is an active participant in the Eyes2Eyes support WhatsApp group and even helped to raise funds for others on the waiting list by hosting a gratitude tea.
There are several ways you can help Eyes2Eyes and make a difference:
Please feel free to get in touch with any questions or suggestions. We’d love to hear from you. DM
Freddie van Rensburg is Daily Maverick’s in-house counsellor for staff and a volunteer Director of The Eyes2Eyes Foundation and has stopped rubbing his eyes because of what he learnt about eye health, corneal health and keratoconus.
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