Dr Amit Patel lost his sight suddenly and now lives with hallucinations caused by Charles Bonnet Syndrome (CBS). Here's his story: 

Almost seven years ago, in 2011, I got married. Only 12 months later, I lost my sight in the space of 36 hours due to a haemorrhage in both my eyes. Let me tell you, blindness is a lonely, tough and heart-breaking place, but with the wonderful support of my family and friends, I have rebuilt myself and I have a great life. Today, I am a husband and, just over two years ago, I became a father. I spend my day with my guide dog Kika, helping others who are living with sight loss and showing that disability – whatever form that may take – does not have to affect your goals in life. I raise awareness of the many frustrating barriers people with sight loss face but I also spread the word about the acts of kindness I witness most days. Because kindness is infectious, and we need more of it in the world.

There is something else I am passionate about: raising awareness of Charles Bonnet Syndrome (CBS). CBS causes people who are losing or have lost their sight to experience visual hallucinations. There is such little awareness of this dreadful condition that so many people with CBS never speak of the hallucinations they experience because they fear that they may be losing their mind as well as their sight. Thankfully, that is not the case, but the hallucinations can be extremely distressing, and they never go away. We all seem to have our own personal types of hallucinations – some people see inoffensive things such as blobs of colour or geometrical patterns, for instance.

But many of us experience frightening visions of gargoyles in a crowd, strangers in our living room, or fires so real that we call the fire brigade. My personal hallucination is of a young woman covered in blood, mud, and tears. She stands in a terrifying silence and she follows me everywhere – on the train, on the tube, in the street. My wife has even heard me shouting at her in my sleep. My guide dog Kika can sense when I have a hallucination and she very sweetly puts her head on my knee to comfort me.

It helps, it really helps, but my hope is that research will soon find a way of removing this distraught, wounded young woman from my life.

Dr Amit Patel 
Your generous donations help us fund research that will help people like Amit, along with thousands of others who are living with Charles Bonnet Syndrome. Read more about current research into CBS treatment funded by donations to NERC.

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Read more about Charles Bonnet Syndrome here