Age at Diagnosis
I had plenty of testing done as I got older, the flashing lights in my face with electrodes stuck on me, no proper treatment, plenty of tests. Was always told glasses won't aid me.
Prognosis or Current State of
I am a lucky fella, and I know there is a lot worse than me out there. I manage quiet well. I don't drive nor ever want to. Public transport for me.
My grandparents had it we think. My parents are fine, but I am the last child of 12. None of my 7 sisters have it. One brother with blue eyes is fine, but myself and 3 brothers who have brown eyes are affected. None of the grandkids are showing effects so far, thank God. Was told my kids won't have it, but their kids may. It skips a generation so we are told. [Note from MD Support Director: This is not necessarily so. It all depends on the genetics and gene pairing of the parents. Here is more information.]
Impact on My Life
Where to start? Crazy at first. Learning in school was funny, because I was clever enough to work through it and had plenty of time to mess, and eventually get thrown out at 16. Done the usual dead end jobs, making cash where I could.
With all the head spins it gave me, I now realise that I am what I am. I would never be in the position I am in now if I had perfect vision. That's all the bad plus all the good. thankfully soccer was my sport when I was 7, so before I found out my eyes would be bad i loved this sport and now am very proud to say I represent my country in 5 a side indoor futbal. Mad as this will sound, I simply wouldn't act, think, dream, be myself with a good set of eyes. I would be different. I am happy with who I am now. P.S. I love the bright lights when I close my eyes at night. It brings me anywhere I want in my mind.
Zoomtext on my computer, magnifiers to read phone texts, fusion aid to read small printed books.
I have begun a 4 year degree in college in Ireland, and I love it. There is great support for people like us, and I get strength from a totally blind friend of mine who clambers around the country.