World Sight Day on 10 October serves as a reminder of the millions of people who live with visual impairment and blindness. It is an opportunity to raise awareness about eye health and advocate for greater access to vision care, especially in developing countries.

While significant strides have been made in addressing issues like cataracts and refractive errors, one of the less publicised, yet devastating, causes of preventable blindness is advanced keratoconus, particularly among individuals between the ages of 15 and 30. This condition, which often arises as a complication of vernal keratoconjunctivitis (VKC) and chronic eye rubbing, has far-reaching consequences for the individuals affected, as well as for society.

Keratoconus is a progressive condition where the cornea, the clear front surface of the eye, thins and bulges outward into a cone shape. This irregularity distorts vision and can lead to significant visual impairment. While the exact cause of keratoconus remains unclear, one well-established risk factor is chronic eye rubbing, which is often seen among patients suffering from VKC. This is a severe form of allergic eye disease that predominantly affects children and adolescents, causing intense itching, redness and inflammation. Due to the chronic irritation, many patients with VKC develop the habit of rubbing their eyes, exacerbating the risk of corneal damage and progression to keratoconus.

In the 15- to 30-years age group, this progression can be particularly concerning. Adolescents and young adults are at a critical stage in their education and early career development. When advanced keratoconus occurs, it severely limits their ability to see clearly, often leading to frustration and a sense of helplessness. The loss of vision can cause these individuals to drop out of school or discontinue their tertiary education, effectively derailing their future prospects.

In many cases of advanced keratoconus, the only effective treatment is a corneal transplant. However, the supply of donor corneal tissue is limited, and the demand far exceeds what is available. At the Steve Biko Academic Hospital, a significant percentage of patients with advanced keratoconus require corneal transplants, but obtaining suitable donor tissue is a constant challenge. Presently, we can only source donor corneas from the US, and we face stiff competition from the private sector. This results in long waiting lists for those who rely on public healthcare, with many patients waiting years for a transplant. During this time, their vision continues to deteriorate, sometimes leading to total blindness.

For the medical personnel working in this field, the situation is both frustrating and emotionally taxing. It is heartbreaking to witness bright young individuals who have their entire lives ahead of them fall into despair because they cannot see. The impact of visual impairment on their education and future employment prospects is profound. Despite our best efforts, including years of fundraising initiatives to finance corneal grafts, the demand continues to outstrip supply. This is one of the most challenging and depressing situations in our department, and it has necessitated the introduction of counselling services for our medical personnel, who often feel helpless in the face of overwhelming need.

The psychological impact of preventable blindness on these young patients cannot be overstated. Losing one’s vision during such formative years can lead to feelings of isolation, depression and anxiety. Many patients struggle to cope with the sudden limitations imposed on their lives, and without timely intervention, their future becomes uncertain.

The situation also places an immense emotional burden on healthcare providers. As doctors and nurses, our calling is to heal, yet in these cases, we are often left feeling powerless. No matter how skilled or dedicated we are, the shortage of donor corneas makes it impossible to provide the treatment these patients so desperately need. This sense of helplessness can lead to burnout and compassion fatigue, which is why counselling services have become a vital resource for our department.

While the challenges are significant, there are several potential solutions that could help address the issue of preventable blindness due to keratoconus:

Increased awareness and early intervention: Raising awareness about the dangers of chronic eye rubbing and VKC among parents, teachers and healthcare providers could help with early detection and prevention of keratoconus. Early diagnosis can lead to interventions such as cross-linking, which can strengthen the cornea and halt the progression of the disease before a transplant becomes necessary.

Developing local eye banks: The availability of donor corneas must be increased. Establishing local eye banks and encouraging corneal donations within communities could alleviate some of the pressure on the system. Public awareness campaigns on the importance of corneal donation could help boost local donations, reducing our dependence on international sources.

Government and private sector partnerships: Collaboration between the public and private sectors could help bridge the gap in corneal supply. Government subsidies, corporate sponsorships and charitable contributions could be used to finance more corneal transplants and improve access to care for those in the public health system.

Telemedicine and remote consultations: In areas where access to specialist care is limited, telemedicine could play a crucial role in early diagnosis and management of VKC and keratoconus. Remote consultations could ensure that patients in rural or underserved areas receive timely advice and treatment, preventing the progression of the disease.

World Sight Day is an opportunity to reflect on the challenges and triumphs in the fight against visual impairment. For those of us working in ophthalmology, the battle against preventable blindness due to keratoconus remains one of the most pressing issues. While the road ahead is long, through increased awareness, improved donor tissue availability and partnerships across sectors, we can begin to turn the tide and offer hope to the many young people whose futures hang in the balance.

By Professor Priscilla Seipati Makunyane, Academic Head of the Department of Ophthalmology at the University of Pretoria and Steve Biko Academic Hospital.

Disclaimer: The opinions expressed in this article are solely those of the author and do not necessarily reflect the views of the University of Pretoria.