Having Usher Syndrome means deafness with a progressive blindness and for some complete blindness.
None of us can possibly know if we will be unlucky enough to lose all sight, however it is a consideration.
I lost so much sight so quickly the thought of any further progression has been scary and something I choose not to think about it unless I have to.
At the beginning of the year I found myself in that position, through no fault of my own, where was I going with my life.
The profession I'd originally dreamt of was gone and now at 20 years old I needed to reconsider what I could do being deaf and already very blind.
Most would assume "Deafblind" what can she do? Well, you'd be surprised at the things I can do!
I doubted myself a lot after diagnosis, always questioning the whys and how's.
The one thing that never changed was my parents determination to nurture and fight for me every step of the way even though they had to learn as we went.
We all need a chance to achieve what we can but how does that work when you are not given the tools to access what everybody else does?
I suffered a huge amount of discrimination through ignorance and it caused me so much distress and naturally I was "being silly or over dramatic", after all I was only going blind through my teens - "no big deal" accept it was a huge deal and terrifying - just imagine.
However, since I was 15 I have spoken publicly, initially to educate those around me of my support needs and over the past 5 years spoken in some amazing places about all sorts of things.
Life with Usher Syndrome is ever evolving, constant changes but luckily for me so too is technology.
There is always something to learn for me as much as everybody else, I just see things differently to others and how to adapt them because I have to and because I can and do.
I try to share positive and negative experiences and I'm delighted to see there is interest in my blogs and in Usher Syndrome and it's challenges from all around the world.
Also he world of technology who in many cases can hold the key to not just those with my condition accessing the world but for lots with disabilities and also the ageing population who can become isolated.
I know what it's like to feel different, to be bullied, to feel isolated, to have anxiety and depression, I know about denial, acceptance and counselling, I've experienced them all just because I have a condition that few understand, but, I understand and I use my bad experiences to advocate for others.
My path is definitely different, it's been made different through lack of accessibility, something else I'm passionate about.
I cannot highlight enough the difference technology makes to my life.
I'd just like those who need it most to be able to access it, it makes complete sense in every sense of the word.
Imagine being able to read, to write, to walk around safely, to join in, be an active part of society and then slowly these things are taken away as sight loss progresses but that you know of technology to enable you to continue with these things but you simply can't afford it - imagine that!