Meet our community:
Bhavini was diagnosed with RP in 1997 aged 17. The consultant who confirmed her diagnosis told her that “there was no cure or treatment and she should prepare to go blind. She said: “He couldn’t advise me how long it would take, it would be years, months or even weeks. His words stuck with me. I tore up my UCAS Application form to study Business Law at a university away from my home town, I stopped taking driving lessons, I never accepted a social invite from my friends and slowly isolated myself.”
For 15 years she was unable to accept her sight loss and hid it from those around her. But with the support of her family and Retina UK, Bhavini has come to terms with her visual impairment and made many positive changes to her life. She received support from Retina UK’s helpline and attended the charity’s information events and support group meetings.
She said: “At first I hid my sight loss because I felt ashamed and didn’t want to be labelled disabled. This left me depressed and isolated. The support I received from Retina UK helped me find my inner confidence and realise I could still achieve my ambitions. I felt like a huge weight had been lifted from my shoulders and I started to live again.”
As well as working full time, the mum of 2 girls has a very supportive and understanding husband. She said: “My children have grown up whilst my sight loss has been deteriorating. They have seen me not being able to read to them, help them with their homework, bumping into street clutter during school runs, not being able to see their artwork or presentations and now even photos or faces. My husband has adapted our way of living, learned how to paint my nails and apply my eyeshadow or check it for me. He helps with matching and coordinating outfits and clothing and has helped me deal and manage each time my sight has reduced.”
In the past five years or so, she has tried to raise awareness of retinitis pigmentosa with the Asian community. She said: “It’s been an emotional and mentally exhausting challenge to break through, but having the confidence to speak openly and confidently about my experiences and advocating for myself has helped my family, friends and my wider community learn more about my condition.
“Retina UK has played a major role in helping me get where I am today. The staff, their services and fundraisers have empowered me to live happily with my RP and not letting it stop me from achieving my aspirations. Their annual conferences meeting other members, listening to guest speakers and hearing from the professionals is an excellent event, however, the families conference, back in 2017 was the first event my parents actually attended where they had the opportunity other people living with RP, other parents with children with RP and it was the first time they understood and grasped the reality of how and why I do things in a certain way.”
Bhavini, is now an Ambassador for Retina UK, dedicates her time to empowering others with inherited sight loss to grow their confidence and live independent lives. She also volunteers on the Retina UK helpline. She is featured in a BBC Lifeline appeal, broadcast in July/August 2020.
“It’s a fantastic charity and volunteering for them enables me to help others which is really rewarding.”
Bhavini works for London Vision and travels independently on public transport with the support of her guide dog Colin.