If you are on Facebook and don't already follow "see Through My Eyes - Stargardt's Disease", head over and make sure you 'like' the page here.
On the page I share up-to-date information on clinical trials and research articles, Stargardt's in the news and other information on services and resources available to people with vision impairments.
I also have a very exciting announcement to make in the coming weeks so make sure you stay tuned!
I know I have been very slack with my blog and it's time I made up for it! I have been very busy having a love hate relationship with my cane, giving up driving and leaving my job. You could say I'm having a mid life crisis (at 27).
Something I have been meaning to do for a while is organising online support groups where we can talk in real time no matter where we are in the world. This will happen through Skype and I hope to organise it on a monthly basis.
I will mediate the groups so we can get the most out of it and we can discuss different topics/experiences at each meeting.
If you would be interested in participating, please send me an email with your name, diagnosis and location to seethroughmyeyes2010@yahoo.com.au or alternatively comment with the details below but I will need your email to contact you.
Let's get this going and connect to help eahother!
I'm very excited to share that Retina Australia is holding a Fighting Youth Blindness Charity Dinner!
It will be held Saturday 20th July at Castle Hill RSL in Sydney.
We are aiming to raise money to fund research for retinal diseases including Stargardt's Disease and Retinitis Pigmentosa, for support for those suffering from the diseases and also to raise awareness of the conditions.
It's going to be a great night out supporting a cause that is still quite unknown amongst the community.
Get your tickets here:
Buy Tickets Now!
You can also join the Facebook page to keep updated on the event including special guests!
Fighting Youth Blindness Facebook Page
To the Australians - you have probably heard the debate about the National Disability Insurance Scheme in the media. I will admit I didn't really think much of it as I hate politics and I didn't really know what it would mean for me being vision impaired.
Guide Dogs have started a campaign to ensure that people who are blind and have vision impairments are not forgotten. As I have previously mentioned, I had help from Guide Dogs with mobility and getting a cane. This was a free service and they came to me. It was so beneficial even though I still have some sight, and the Guide Dogs people were so lovely and supportive and put me in touch with other organizations and people that could help. Which is why I strongly support taking part in this campaign as to keep the support and funding for Guide Dogs to make their wonderful services easily accessible to everybody.
Check out the link below and ENTER YOUR DETAILS!!!!
Vision Loss Australia
I had my first contact with Guide Dogs last week, but no, unfortunately not to get a cute little retriever (that I want so badly to cuddle). Not only do they do the obvious guide dogs but also mobility training, advocacy and information services amongst other stuff.
My first appointment was to get to know me and what I might need. It's great because they come to you and help you become more comfortable within your own environment. We went for a walk on the streets around my home, and then I was asked if I wanted to try using a stick. I was a bit scared 1. what if people noticed me and 2. I thought I might look silly, but I realised how stupid these thoughts were and who cares what anyone else thinks?! Not me!
I'm glad I gave the stick a go it was really helpful and I didn't realise that when I walk I pay most my attention to the ground. It means I can look forward instead of watching my own feet.
Guide Dogs offer mobility training, where they come out to you and go through techniques to get around in your daily life. I have organised to do this as I thought I may not need everything at present but it is a good time to learn the skills and start practicing them.
Did I mention I ordered my own stick, yes and it's going to be PURPLE! (Very excited).
I highly recommend Guide Dogs, which are in every state in Australia. They are very helpful, compassionate and knowledgeable and I look forward to keeping in contact with the organisation.
Guide Dogs NSW/ACT
Guide Dogs Victoria
Guide Dogs SA/NT
Guide Dogs Tasmania
I'd like to share artworks created by Jenna who has Stargart's Disease. These are a few of my favourites.
She creates such gorgeous, emotional works and to think she doesn't have her central vision I can't believe how absolutely amazing they are. It is truly inspiring.
Thanks Jenna!
I've had an overwhelming response from my post "Not just a vision issue" so I have put together a list of links that some of you might find useful for counselling, psychology or even just to have a chat. These are all Australian organisations and if anybody has any from overseas please share.
Most importantly, stay positive and you are not alone :)
Lifeline 24 hour telephone support - 131114
Lifeline
Beyond Blue - Not just Depression but anxiety, bipolar disorder and other mental illnesses
Beyond Blue
Headspace - Youth Mental Health for people 12 to 25 years old
Headspace
I just want to say a big thank you to everybody who has contacted me and supports this blog. I can not explain how much I appreciate your kind words and encouragement. I will do my best to gather information and get Stargardt's out there so hopefully in the near future we can have a treatment that is available to all of us.
You are all my inspiration just as much as I might be yours! Never give up on your dreams and what you have always wanted in life because this isn't going to stop you but rather make you even more determined to succeed!
Thank you again!!!!
