Usher Positive

Bio: I've been watching myself go blind for over 20 years. I was diagnosed with Retinitis Pigmentosa (RP) in my late teens, having lived with deafness from birth due to Usher Syndrome. I knew I would at some point start to lose my sight, but I had no idea what going blind would actually look like. Retinitis Pigmentosa is a stealthy eye disease, it sneaks up on you and catches you unaware. At diagnosis most people have already lost a considerable amount of sight. I had years of warning with full sight and was able to observe each change from the beginning. It is a very hard condition to explain. This is why I want to share my insights from watching myself go blind, to demystify it for others and make it a little less scary.

View complete profile


One thought on “About”

  1. I think its great that you’ve found a way to put it all down on ‘paper’. It’s a hard journey and one where we know the ending but can never tell one day to the next what the next step is supposed to be. Never give up. ‘Cool Runnings’ – peace be the journey.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Observations on gradually losing sight – What do the visual changes in Usher syndrome or Retinitis Pigmentosa actually look like?