The RP Fighting Blindness Charity held its first Families Conference earlier this month which saw around 30 families come together to meet others who have similar Retinal Dystrophies all going through the same situations.
Guest speakers shared their knowledge on the latest research, genetic counselling, support services available to both adults and children affected, as well as inspirational stories from those living with RP but have gone on to achieve their ambitions and not let their vision impairment hold them back. The members who attended were able to spend time with each other during the weekend and so did the children over activities that were planned for them. The workshops on offer for all to participate in provided additional sources of support and information.
As an ambassador for RP Fighting Blindness, I was invited to speak about my experience of living with Retinitis Pigmentosa. From a shocking diagnosis, moving to London, bringing up children, and then finally getting the support I desperately needed, I finally accepted and came to terms with my sight loss. I found ways I could relive my life; from volunteering, setting up a social group, organising charity fundraisers and now working for East London Vision.
“Was I nervous presenting at my first public speaking event? –most definitely. Would I do it again? – yes indeed.” I had learned that the biggest help and support I received was from another vision impaired professional who knew exactly what I was going through and how I felt. In fact, this is exactly what people said to me about my talk and how they could all relate.
Attending as a delegate was very useful, not only for me but for my family as well. My daughters met other children with vision impaired parents and children who were affected with sight loss too. It was a great opportunity for them to share their feelings over fun activity sessions and during times of socialising. Equally, my husband met other partners in the same situation and it was certainly a great bonding time for them. Moreover, I felt that my parents, who attended their first RP information day ever, found it extremely useful and engaging by talking to other parents and seeing how other people with RP cope and manage in different ways.
Overall, it was a fantastically organised weekend and very much-needed. It was a privilege to have been asked to speak at the event but at the same time thrilled to have been part of it; gaining and sharing lots of information, and connecting with others.
One aspect which I can take away from the weekend, and would love to share with others is – please talk about your emotional journey, whether it be to a family, friend or professional, as there is always someone who can help and you do not have to go through it alone.
If would like to listen to my talk at the RP conference please click on the YouTube video directly below.
Written by Bhavini Makwana