Newsletter No. 360

Vision is one of the most crucial human senses, yet over 300 million people worldwide are at risk of vision loss due to various retinal diseases. While recent advancements in retinal disease treatments have successfully slowed disease progression, no effective therapy has been developed to restore already lost vision — until now. KAIST researchers have successfully developed a novel drug to restore vision. KAIST (represented by President Kwang Hyung Lee) announced that a research team led by Professor Jin Woo Kim from the Department of Biological Sciences has developed a treatment method that restores vision through retinal nerve regeneration.

The research team successfully induced retinal regeneration and vision recovery in a disease-model mouse by administering a compound that blocks the PROX1 (prospero homeobox 1) protein, which suppresses retinal regeneration. Furthermore, the effect lasted for more than six months.

Retinal therapy may restore lost vision

Blind and partially sighted people could become ill from medicines and medical devices, because they are not being listened to when it comes to designing, prescribing and administering treatments. The Safety Gap’ report commissioned by the Patient Safety Commissioner, Prof Henrietta Hughes, found that patients with all forms of sensory impairments were put at greater risk when taking medicine or using medical devices which were supposed to help their symptoms improve.

The Commissioner highlights issues particular to blind and partially sighted people with diabetes who described ‘degrading’ treatment and a struggle to manage their condition because of an inability to accurately monitor their blood sugar levels.

The report found that people with diabetes and who were blind and partially sighted experienced:

• a substantial burden on a daily basis to manage their condition in a safe and effective manner
• ‘Anxiety and fear’ about the risk of taking the wrong medicine and dose
• designs of diabetes-specific devices and technologies -which had the potential to be life-changing- but which ‘failed to meet accessibility needs’

Prof Henrietta Hughes, Patient Safety Commissioner, said: “It is unacceptable that the safety of blind and partially sighted people is put at risk because their voices are not included in the design of medicines and medical devices. Manufacturers, regulators and healthcare providers must take their views into account when designing devices and providing health information in an accessible way. Patients deserve better and it is our collective responsibility to make these changes.”

New research shows the unhealthy state of access to medicine and medical devices for blind patients

Physical and cognitive barriers continue to limit disabled people’s ability to travel by train, which has a downward effect on their access to vital services such as education, healthcare, employment, or leisure. Cadence Innova has partnered with the Department for Transport, to help bridge this accessibility gap.

The UK is home to 16 million disabled people, representing 24% of the population, according to the Family Resources Survey 2021/22. Yet, for many, the nation’s rail network remains a daunting and often inaccessible space. Research by the Office for National Statistics (ONS) in 2022 found that disabled people face significant barriers to accessing goods and services, with transport standing out as the most prominent obstacle. One initiative already making a difference is Passenger Assist, a service provided by Train Operating Companies (TOCs) to help customers who require assistance throughout their journey. Passenger Assist brings together 38 organisations across the industry, including TOCs and contact centres, to coordinate and deliver essential support.

Bridging the accessibility gap in rail travel through Passenger Assist

Blind content creator and TikTok star Lucy Edwards says she’s “so excited” to be on a health kick to undergo IVF, but reveals the dilemma she faced in deciding to screen out the very gene that made her blind. “I’m so broody,” the 29-year-old tells the BBC Access All podcast.

Lucy and her husband Ollie married at Kew Gardens two years ago and are now ready to start a family – but there are complications to consider. Lucy has the rare genetic condition Incontinentia Pigmenti (IP) and lost her sight due to this aged 17, just months after meeting Ollie. The condition runs through the female line – Lucy’s mum has IP although isn’t blind, her Grandma did too and her great-aunt was blind in one eye. Lucy is totally blind, but, if she had been a boy, she may not have survived.

‘Why I want an IVF baby to screen out gene that made me go blind’

“People who are fully sighted are actually blind to the needs of people with a visual impairment,” a Hampshire mayor has said, adding “that needs to change”.

The Mayor and Mayoress of Eastleigh have been shopping in the town’s centre wearing goggles designed to impair their vision. They want to improve accessibility for those living with a visual impairment (VI) and raise awareness among other town councils.

Dave and Jean Pragnell spent more than an hour shopping to try to understand what people living with VI experience. The goggles they wore were designed to mimic sight loss caused by retinitis pigmentosa, a genetic condition also described as pin-hole vision.

Rob Hiley, who also accompanied the mayor on his shopping spree, was born with the condition but did not notice his vision deteriorate until he was 45. Now 72, he said what he saw was similar to the tunnel-vision goggles worn by the mayor.

‘Blind goggles help highlight access issues’

A sign spelling out Colchester in Braille has been unveiled at the city’s main railway station.

The blue and white plaque – which features tactile lettering – is part of an exhibition of artwork created by blind and partially-sighted people.

The exhibition, called Do You See What I See?, coincides with the 200th anniversaries of both Braille and the birth of the modern railway. The exhibition – which aims to raise awareness of how sight loss impacts people differently – has been designed by the Essex Sight Loss Council and was funded with £5,000 from Greater Anglia’s Customer and Community Improvement Fund. The artwork represents a number of different eye conditions, such as peripheral vision loss, and cloudy or hazy vision, based on descriptions from blind and partially-sighted people on the ways they perceive the world.

Visitors can scan a QR code to listen to an audio description of each piece of artwork and the eye condition it represents.

Braille sign unveiled at railway station