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"Be who you are and say what you feel because those who mind don't matter and those who matter don't mind"

Dr Seuss


Sunday, 22 May 2016 18:50

Usher to Usher

Written by  Bethanie
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I hope you don't mind but after researching usher's syndrome and RP I came across your blog and I wanted to introduce myself. My name is Bethanie (or Beth), I'm 23, I'm from Staffordshire but currently living in Newcastle upon Tyne and like you, I have Usher's Syndrome. 

I was born profoundly deaf, I had the cochlear implant at around age 3/4 and at aged 11 I started to lose my sight. The realisation of my Retinitis Pigmentosa was pretty traumatic, I had woken up in the night, blind, frantically searching for the light switch. After this had happened a couple of times my parents decided to take me to get my eyes tested. It was then that they had diagnosed me with night blindness and shortly after, Retinitis Pigmentosa. My sight continued to deteriorate throughout my early teens, until I was around 15/16 when the deterioration stabilised, leaving me with tunnel vision and they discharged me. They also finally diagnosed me with Usher's Syndrome. Going through the troublesome teenage years I guess I chose to ignore it, push it to one side as I desperately wanted to lead a normal life. 

I finished my GCSEs, I did my A levels, I successfully completed a foundation diploma in art and design as like you, I am a very visual and creative person. I then left my small village and moved four hours up north to the bustling city of Newcastle upon Tyne to study at Northumbria University.

I was on the right track of leading a "normal" life and being a "normal" person. It was moving to university that made me realise that actually, life is different for me, life is harder. I realised my capabilities and my limitations, I struggled with it to say the least. Once again, I tried to ignore it but slowly I realised that I couldn't any longer and that I needed to be aware of my condition as well as others and that it was okay that I needed help. Slowly I started to tell my friends at university about my "challenges", and slowly I started to build my self confidence up. Since then, I have been researching Usher's Syndrome and RP, I even based one of my final projects at university on my condition where I created a publication called, "Tunnel", which consisted of imagery and short stories about my experience of having RP. I graduated from university last summer, obtaining a BA(Hons) in Fashion Communication which is one of my proudest achievements to date.

Every now and again I still struggle with the uncertainty of my future and after reading blogs like yours I realised that I need to stop suffering in silence and contact others with Usher's. I am currently going through the process of rebuilding my project that I created at university (Tunnel) by starting my own blog about my journey, focusing on improving my RP symptoms through changing my diet and lifestyle. I am also researching ways that I can get involved to help raise awareness.

Ultimately, I just wanted to say hi, to let you know that you have inspired me and to thank you. 

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