On World Retina Day, 24th of September 2022, Retina International is calling for society at large to not to leave anyone in the dark as we emerge into the light by highlighting the challenges faced by those living with retinal conditions post-lockdowns.
DUBLIN, September 24th, 2022: As most lockdowns have now lifted and society has entered a “new normal,” those living with retinal degenerative diseases face significant challenges including reduced mobility, further reduced access to work and education, and reduced support for their wellbeing.
The Covid-19 lockdowns and closing of eye clinics have resulted in irreversible loss of vision for many, and countless individuals continue to miss critical screenings and check-ups with their eye doctors. According to a 2021 study, 36.9% of neovascular Age Related Macular Degeneration (nAMD) patients who had a delay in treatments of 8 weeks or more due to COVID-19 lockdowns experienced significant visual loss (5.2 letters) and only 75% of these regained vision to baseline after recommencing treatment (1).
People affected by all forms of retinal degeneration should attend regular eye appointments. Those living with Inherited Retinal Degenerations (IRDs) for example can be more susceptible to early cataracts as well as other vision problems such as glaucoma and refractive error. There is a growing concern that those living with IRDs are not returning to the eye doctor post-lockdown. “Covid has impacted routine appointments. It is essential to reinforce to everyone living with a retinal condition the importance of visiting their eye doctor to check their eyes. We all have been through difficult times, but we must continue to take care of our eyes,” says Marina Leite, Retina International Youth Council member.
After months of isolation, people living with retinal degenerations are realizing that not only has sight been lost during that time, but their ability to navigate a once familiar world has diminished; this in turn affects one’s instinctual navigation.
In many towns and cities the direction of traffic flow, traffic lights and signage may have changed, so too has technology. Many stores have updated to self-checkout, which can be a significant struggle for people with sight loss. “Many cities and towns adapted to lockdowns by changing the layout and internal systems, and these changes have remained,” says Franz Badura, Chair of Retina International. “While these changes may seem minor and logical to those who are fully sighted, for those who live with partial vision this is a huge problem and requires us to re-learn how to navigate an environment that was previously so familiar but now is alien.”
The emergence post covid has also affected access to education and employment for those living with sight loss and partial sight. Many have had to give up jobs they love due to declining vision and challenges with mobility, and caregivers have had to adjust their own lives in order to better support their loved ones. “During covid, a lot of people lost their jobs, and in many countries, economies are still recovering. In a poor job market, companies can be reluctant to hire new people. This happens in general, but it’s twice as bad for people with special challenges like a visual impairment,” says Christina Fasser, former president of Retina International. “In a buoyant job market, those living with partial sight have to consider the route to and from work. With new obstacles emerging, such as soundless electric bicycles and electric cars, these routes pose new challenges. As we enter into a ‘new normal,’ readily available rehabilitation services and mobility training for those living with retinal degenerative conditions must be prioritized to ensure equal access to career and education opportunities.”
A concern emerging in many countries is the intention of governments to limit the use of street lighting to conserve energy. Franz Badura, Chair of Retina International is particularly concerned about the impact that this may have on those living with sight loss. “We all as citizens understand the need to conserve energy at a time of real crisis at a global level. However, limiting the use of street lighting is causing huge concern among those affected by sight loss and partial sight. Many people living with IRDs experience night blindness and rely on street lighting for their mobility and independence to go to work and school,” Mr. Badura says. “The prospect of turning out the lights will further isolate this community and will compound the issues we are dealing with post covid. Retina International and its member organisations are calling on governments to consider the impact of these decisions on this community and on public safety.”
The isolation caused from Covid-19 lockdowns has continued for many in this community. The lack of emotional support for people with low vision, limited accessibility to activities and information, societal stigma, and diminished education and employment opportunities all impact an individual’s wellbeing. Feelings of anxiety, depression, and isolation are common among those with sight loss, and the pandemic has exacerbated these.
Moving forward into this “new normal” means addressing the challenges the visually impaired community have faced during the entirety of the pandemic, from the start of lockdowns at the beginning of 2020 to the reopening of the world. By prioritizing and protecting the wellbeing and inclusion of those living with retinal conditions, we can work to ensure we don’t leave anyone in the dark as we emerge into the light.
Retina International
Retina International is a global umbrella organisation for patient-led charities and foundations who support research into rare, genetically inherited and age-related retinal conditions.
RI believes that education leading to participation is a key driver in successful innovation.
As a highly networked community, our objective is to promote retina research through the engagement and education of our growing patient community and by developing robust evidence-based advocacy tools to bring about positive change. We believe in structured collaboration inclusive of all stakeholders in order to address the unmet needs of patients affected by retinal disease, by employing a professional approach to all that we do.
For more information, visit our website: www.retina-international.org
Reference
Stone, L.G., Grinton, M.E. & Talks, J.S. Delayed follow-up of medical retina patients due to COVID-19: impact on disease activity and visual acuity. Graefes Arch Clin Exp Ophthalmol 259, 1773–1780 (2021). https://doi.org/10.1007/s00417-021-05174-4
Please note:
You can download this press release as a Word Document in five different languages. These translations have been kindly provided to us by our dedicated members: David Sanchez, Marina Leite, Jeannine Sutter, and Konstantina Karagkiozeli. Click the links below to download:
Click here to download the press release in English.
Click here to download the press release in Spanish.
Click here to download the press release in Portuguese.