Nicole Beddard, a master’s student who had bilateral retinoblastoma as a child, has set up a research project which she hopes will help families affected by Rb in the future. She’s looking for parents to get involved…
Hello, my name is Nicole Monique Beddard and when I was three months old I was diagnosed with bilateral retinoblastoma.
To save my life I had to undergo many different forms of treatment, including having my left eye removed. My right eye was subjected to cryotherapy, lens sparing radiotherapy and a radioactive plaque was inserted to get rid of the five tumours which has left five scars on my retina.
At the age of five I was given the all clear and then by eight years old I was told that a cataract had started forming in my remaining eye.
Throughout my childhood, teenage years and the beginning of my adult life, I struggled with different things – for 10 years of my life throughout school, college and my undergraduate degree I covered half of my face (over my left eye) as I had become ashamed of what I looked like.
At the end of university I realised that it doesn’t matter what people think; all that matters is your own happiness and I have the wonderful support of my family and friends that make me proud of who I am and what I have gone through.
I now wear my first ever prosthetic eye in a ring as it creates a great conversation starter.
My cataract has not once stopped me from achieving anything and I go for yearly appointments to the opticians who are rather shocked at how good my eyesight is under the circumstances.
I am now in higher education studying for my master’s degree in health psychology and clinical skills and I really want to help people who are experiencing all of this as I can imagine it is a scary process, and when I have children I will have to go through the same as my parents did.
During my last annual check up in August 2015, I realised that CHECT – as well as all of the team who helped to save my life – have done so much for me and it is about time that I repaid the favour, but I am in need of your help!
Share your experience
I am looking for parents with children who have had retinoblastoma to tell me of their experience in going through the diagnosis and treatment.
It will all be done online and no face to face contact is needed. The aim is to see if there is any further support that can be put in place to help the parents of children affected by Rb.
This will then hopefully lead on to further research as a PhD project. I fundamentally want to spread awareness of Rb and help those that are affected by it, which means that the research, expectantly, will be published.
There is much needed research into this topic and I would be very grateful for your help.
Get in touch with Nicole
If you are interested or would like further information please contact: NicoleBeddard@gmail.com