Living with Stargardt’s — transition from India to the UK

Stargardt’s disease, a rare genetic disorder that causes central vision loss in both eyes has shaped my life with challenges and adaptations. My experiences of living with Stargardt’s disease changed as I moved to United Kingdom, back in September 2023 to pursue a Master’s in Public Health at the University of Manchester. I was diagnosed with the rare disease in 2020 and since then I started to explore higher education prospects and better medical assistance. The decision to relocate to UK, away from family was tough but strictly driven by the possibilities of inclusive environment for persons with disabilities.

As I arrived in Manchester, I was introduced to my University’s Disability Advisory and Support Service (DASS) that provided study and library support and assistive technologies to access education resources equally. The study notes were handed over to me in large bold fonts to ease reading and learning. I was also provided with personalised coordinators that worked with me to develop appropriate evacuation plans at the time of an emergency, even in my accommodation. Moreover, the commitment to inclusivity and accessibility in all activities of the university allowed me to be vocal about my disability and view it as a strength. Although, it was difficult for me to navigate through the public transport system and roads all alone, the traffic rules and helpful staff made it easier.

The added advantage was that I found that the general attitude of the UK society is accepting and cohesive for individuals with disabilities. This transition has been a meaningful and learning experience for my future endeavours. Although the challenges of living alone in a completely new place were evident, the support and integrative environment made it a smoother journey. My experiences show that social acceptance and equal opportunities shape the lives of people with visual impairments.

Sindhu Khanna