I was diagnosed with Von hippel Lindau disease at the age of five years old it is a very hard genetic condition in the way it affects my life I have to attend lots of hospital appointments yearly. make sure things are running smoothly in my body like getting an MRI scan every six months for each part of the body seen different doctors. I have had different types of surgery but mostly in my eyes. Vhl has affected me the worst I have also had kidney operation where I had to stay in the hospital for a couple of days to get a tumour removed before it progressed into anything dangerous for my body. But in 2020 that’s when my eyesight started to get worse so I went to the hospital and my doctor said we need to start eye surgery as soon as possible so I was awake for multiple of these surgeries to try and fix my eyesight but it wasn’t the way Dr k wanted it so sadly I never got it back I have learnt how to use a white cane and use multiple kitchen tools when cooking in the kitchen I have learned different ways to do different tasks day and day out as I also studied at the Royal National College for the blind in Herefordshire, United Kingdom and that changed my life for the best as I learned so much that I got qualifications, I didn’t know I could achieve with site loss I studied there from October 2021 to July 2024 I made so many different friendships ones that I have stayed in contact with to this day and friends for life . I do mobility in my local area with my worker David. me and my rehab officer David have been learning to walk from my house to the local shops being blind will take time and adjust and adapting two different things. The way it has affected me mentally.
It has affected my mental health and the way I have bad days and good days But I have my family who also have the same genetic condition as me my brother my sister, my mum and my baby niece so when we are having bad days, I speak to my family and I speak to my friends about my problems. #vhlawareness
