‘I’ve rebuilt my life despite sight loss’
CAMPAIGNER WANTS ASIANS TO BE AWARE OF GOOD EYE HEALTH AFTER HER DIAGNOSIS OF RETINITIS PIGMENTOSA
BEING told as a teenager that I would go blind was a complete shock and a devastating experience.
The consultant said there was no treatment or cure, I would go blind and it could take years, months or weeks. With no exposure to sight loss or other blind people, I was left feeling lost, confused and numb for several years. No support was provided to me or my family on how to cope, manage or deal with this devastating news, so I lived in complete denial.
It took me almost 15 years to receive the first bit of support and that is when I started rebuilding my life and accepting my diagnosis of Retinitis Pigmentosa.
The charity Retina UK and my rehabilitation officer supported me with mobility and cane training, living independently and connecting me with others in a situation similar to mine.
Over the years, I have been working on my confidence and using adaptations to enhance my ability to do everyday tasks. They include using accessible technology to communicate on social media, carrying out my work duties, using apps to magnify food labels, which allowed me to cook independently, read my posts and even match my bangles to my saree.
Building on this, I started volunteering, enhancing my skills and experiences, allowing me to progress into employment. I now work for London Vision as their engagement manager, campaigning on inequalities for blind and partially sighted people to ensure health, transport and access is accessible to them.
I am the ambassador and chair of the London peer support group for Retina UK, a trustee for Transport for All and was recently appointed co-chair of the BAME Vision committee alongside Adam Mapani.
For the past six years, I have shared my personal experiences living with this deteriorating eye condition, sharing available resources, support and aids on my social media platforms. I also organise charity fundraising events to raise awareness in Asian communities.
In addition, I have launched a podcast to share my experiences with those from BAME backgrounds. You can listen to it on most platforms by searching for VisualEyes with Bhavini. This is also the name of my Facebook page.
The newly formed BAME Vision Committee aims to reach and engage with local communities from BAME backgrounds to highlight the importance of looking after your eyes.
We have put together a document that outlines general guidance. You can find out more by visiting londonvision.org and looking for National Eye Health Week Guidance. There is information on exercise, alcohol, smoking and attending appointments in the current situation.
Each year, the third week in September marks National Eye Health Week. This year it runs this week, and the theme is general eye health.
In our communities, where diabetes can be more prevalent than in other groups, it is important to try and prevent diabetic retinopathy, which can lead to sight loss. Glaucoma and high or low blood pressure can be managed and, in some cases, avoided if it is detected early enough. These conditions can be picked up by your optician and therefore it is important to have regular eye checkups for sight and equally for eye health.
You can get in touch with me at bhavini. makwana@ londonvision. org for more information about anything relating to eye health, sight loss, support or services.