Lagos State Working With Partners To Address ‘Usher Syndrome’

Lagos State Government is creating a more inclusive environment for Persons who might be living with Usher Syndrome, a genetic disorder that causes blindness and deafness.

Lagos, through the Office for Disability Affairs, has now joined some countries around the world to commemorate global usher syndrome day.

This declaration forms part of the policy of inclusion of the state government towards ensuring that no one is left behind, including persons with disabilities.

Imagine living in a world where you’re gradually losing your sight and hearing. Usher Syndrome, a rare genetic disorder, affects 400,000 people globally, causing deaf-blindness and mobility issues.

In Nigeria, the condition remains poorly understood and addressed
For the Executive Director, Lion Heart Ability Leaders International Foundation, Solomon Okelola, being deafblind presents a daily challenge, more concerning is that Nigeria lacks genetic testing facilities and knowledgeable medical practitioners that can identify and manage this condition.

Solomon’s personal struggle led him to establish this foundation in 2019, advocating for awareness and proper care for those affected.

His organisation has been able to discover 63 persons with deaf-blindness in the southwestern region, most of them in terrible living conditions.

With support from the disability rights fund, the foundation conducted a research on the level of awareness of usher syndrome among healthcare workers in Lagos and discovered many medical professionals in Nigeria aren’t familiar with Usher Syndrome, which could be why deaf-blindness cases are on the rise. This knowledge gap doesn’t just harm individuals now, but also puts future generations at risk.

Usher Syndrome is inherited through a specific genetic pattern, requiring two defective genes – one from each parent. Carriers with a single mutated gene remain unaffected but can pass it to their offspring. Only those who inherit two faulty genes, one from each parent, will develop Usher Syndrome.