Patient stories
Isabelle, UK

Diagnosed age 41, now aged 45. Based in London, UK.

I had great difficulty getting diagnosed with myopic CNV. My optician told me it was 'myopic maculopathy' and that there was nothing I could do about it, despite the fact that grey smears had appeared over words I was trying to read and my baby daughter's face seemed to melt when I looked at it. I decided to attend eye casualty at my local hospital. There I was first sent home, and then, when I re-attended and refused to leave, was eventually given an appointment for fluorescent angiography 3 weeks ahead (too late for an injection to preserve vision!). By this point I had self-diagnosed courtesy of the Internet, and paid to see a consultant privately. As a result, and at great expense, I was treated successfully with an anti-VEGF agent. In the four years since this time, I have experienced further lacquer cracks and CNVs in both eyes, the latter treated with Lucentis or Eylea. The lacquer cracks are, in the words of one ophthalmologist, 'spectacular' - not an accolade I welcome as these centrally located cracks may well progress to untreatable atrophy.

The diagnosis of Myopic Macular Degeneration was wholly unexpected and, frankly, devastating. I became depressed for a period and worried endlessly about losing my vision. As the parent of two very young children, the youngest only 10 months old when I was diagnosed, and as a teacher and academic, I could not envisage how I would cope with sight loss. I felt entirely isolated as I knew no one with a disease I had only just learned about myself. The Internet was, and is, full of grim predictions and statistics, and I was unable to find any information about support or research that might enable me to feel more positive about my condition. I also worried about how my children's eyesight might be affected. The diagnosis has meant living with a burden that I have managed to adjust to, but will never be able to shake off. I feel as if the sword of Damocles is hanging above me, and that at any time, I might suddenly lose what most people take for granted - the pleasure of reading, of seeing my children's faces, looking at the textures and patterns of flowers, and a thousand other things that we rely on that tiny, fragile fovea to enable. Sometimes I fantasise that it has all been a mis-diagnosis and that my eyes won't ever lose vision, but the hard truth is that the prognosis for me right now is a lot bleaker. As someone whose identity (and whose value in society) is bound up with reading and writing, the prospect of becoming unable to do so is horrendous.

Being able to halt the progression of MMD or, better, to cure it, would mean everything to me and my family. Treatments that would safeguard my central vision, and that of my children and grandchildren, should any of them fall prey to this disease, would be life changing.

I recall being asked as a teenager, long before I had any inkling that my eyesight would ever become vulnerable, which of my senses I would least like to lose. I and all of my friends picked our eyesight without hesitation. I now live with the very real possibility of losing my sight, courtesy of some grandparental myopia genes that skipped my parents, and whatever environmental influences that tipped the scales towards MMD. If I do become unable to read or to see my children's faces, I feel that my whole identity will collapse about me. Were science to save me from that, this long-time atheist would feel as if I had been granted a miracle.