Saturday, 1 May 2010

Living with Ushers - Intro to Me

My name is Emma, aged 24 and live in the sometimes sunny but mostly dreary England. I got married to an amazing man called Mike in July 2006 and we are currently looking to buy a new house which I hope will be the family house of my dreams.

In 2005 I was diagnosed with Ushers Syndrome, specifically Type 2a. My family are ever so supportive and in some ways I am very lucky as my younger and only sister too suffers from Ushers meaning I've always a friend to talk to who really understands what is going on. For those who may not know, Ushers Syndrome Type 2 means sufferers have Retinitis Pigmentosa, a deteriorating eyesight condition along with a severe or profound hearing loss.

Since birth I've been severely deaf although I had a late diagnoses at 3½ years of age which resulted in me needing to wear hearing aids in both ears. Loads of speech therapy needed but I feel I have the near perfect English accent that all my friends and family have too.

Recently I decided I should start keeping a diary, how it's been since being diagnosed, what has happened since and what is going to happen. Maybe it will help me, others with Ushers or maybe it will help friends understand a little bit easier what is going on.

After all it is a little bit scary, knowing you're going blind... but hey, there are a lot of positives also, free bus passes, disability allowance, the possibility of a dual trained hearing and guide dog and a few more. I've been told I have a fairly positive outlook on the whole thing, I put this down to being a fairly positive person but I'm also not one to complain or rather only to those closest to me.

So seeing as I don't mind talking about it, maybe it will help, we'll see...

3 comments:

  1. Thank you for sharing your comments. It's always great to read such positive things from someone with Usher. It's a big help.

    ReplyDelete
  2. I'm looking forward to reading more of your posts. Your insight and experiences will help many. I have 2 daughters with hearing loss and we're in the diagnosis process for Usher's. Not exactly sure what the outcome will be, but we'll take it one day at a time!

    ReplyDelete
  3. Please take a look at my blog sometime. I am just starting out and I am looking for more readers!/
    http://www.usherssyndromelife.com

    ReplyDelete