It was March 2020, the pandemic was just about to kick off and the world was in a panic. During this time whilst working as a Clinical Nurse Specialist, I was asked if I would go to work in ITU of the hospital trust I work in. I instantly jumped at the chance to help and offer my skills. However, unbeknown to many, I was experiencing visual changes. Starting in my left eye. I went to the optician who sent me straight to Moorefields eye hospital A&E. I was told  I had suffered a retinal haemorrhage. I was told this “just happens” and to carry on with life and it will resolve. I threw myself into the new, scary world of nursing ventilated patients during the first wave of the pandemic. As the days and weeks went on, my vision became worse. It came to the point that  I was unable cross the road safely as I could not see the green man. I was unable to recognise familiar streets in my area, unable to see my face in the mirror and not see writing and print. I was scared to talk about it as there were bigger issues going on in the world than this - I thought at the time. I went back to moorefields and they signed me off work to investigate further. Following almost 3 months of intense tests and a misdiagnosis. I was eventually diagnosed with LHON. A rare genetic disease that effects the central vision. I was signed off work and registered disabled. My life as I knew it crumbled as I was continuously told “we don’t know how far advanced the blindness will go”.

My role as a professional, a wife, an independent sociable, happy care-free person was taken away from me, with the future looking fearful and uncertain. My central vision loss was sudden, rapid; and it felt like my sense of who I am was doing the same. 

I was directed to RNIB (Royal National Institute for Blind People) by staff at Moorefields. I called them up ans shared my story of how my life was at that moment. They helped support me by guiding me to aids/device/access to work grants/ accessing psych support and helping me to get a grip on a new way of living. 

I was off work for 7 months, during this time I tried to come to terms with everything and also throw myself into relearning life. It was hard, emotional and scary for me and my family and best friends. I had to dig deep for strength and courage and determination, I didn’t want pity, I wanted to keep things real. So I did. 

I am now back to work as a Clinical Nurse Specialist, full time. I have assistive technology and equipment but I can do my job. I lead an independent life with adjustments, and I am positive about the future. I don’t like to think how different things would be if it wasn’t for the support of the RNIB. 

So, 2nd October 2022 I am running the London Marathon!! I am running independently, without a buddy or guide.  I want to raise as much money as I can to give back to the RNIB to help enable them to support and help someone like me. 

I am a novice runner and I am visually impaired so this is the ultimate challenge. 

Please follow the link if you would like to help support me in running the marathon and raising money for such a worthy cause. 

Thank you millions 

Lhara xx