Alicia's Story - Stargardt's Disease
ฝัง
- เผยแพร่เมื่อ 29 พ.ย. 2015
- Inspired to Thrive: Alicia’s Story
International Day of People with Disability, Thursday 3 December
At 44, Alicia Thompson is a professional businesswoman with a husband, a teenage son and a love of knitting. Not much different from many women you’d meet on the streets of a busy city, except that Alicia has lost 95 per cent of her sight and, since the age of 19, has lived with loss of central vision now making her legally blind.
Alicia has Stargardt’s disease, a hereditary eye condition which caused the cells in the centre of her retina to die, affecting her macula and central vision. It leaves Alicia with only peripheral vision. However, it hasn’t stopped Alicia from living life to the full.
Alicia works at Westpac in Sydney’s CBD where she is part of a small team responsible for guiding units through processes of change. She manages her detailed work using computer technology with cameras, magnification and text to voice recognition software.
Using applications on her iPhone, she negotiates the city independently every working day of the week and at home enjoys regular family activities with her husband and son. In moments of free time, Alicia knits and crochets using magnification. The use of magnification technology, she says, has changed her life.
“I’ve never not done anything because of my vision impairment,” says Alicia. “I may not do things the way sighted people do, but I don’t let that stop me. Different doesn’t mean it’s wrong. And hard doesn’t mean you can’t. It just means finding a different way to do it. It’s something I have to do. If I still want to have a normal life and enjoy the things I do then I have to find other ways to do them.”
Julie Heraghty, Chief Executive Officer of Macular Disease Foundation Australia said Alicia’s ‘can do, will do’ attitude is an inspiration to us all on International Day of People with Disability, a United Nations sanctioned day that aims to promote an understanding of people with disability and encourage support for their dignity, rights and well-being.
“Macular Disease Foundation Australia endorses International Day of People with Disability initiative and celebrates the enormous achievement of Alicia Thompson, a Friend of the Foundation, and so many others like her,” said Ms Heraghty.
This short video featuring Alicia, documents her inspiring and positive approach to life and her use of innovative technologies to navigate the challenges of work, home and leisure.
For further information contact Macular Disease Foundation Australia on 1800 111 709 or visit www.mdfoundation.com.au.
❤️ my son 8 Years has It. God bless you all
Me and my older brother have this disease and I've never met anyone else with stargaurts so watching other people's story's with it make me feel a lot better about it
Thanks for the video! I also have this disease and I feel like I'm one in a million(like I'm the only one who has it) :) 21 years and counting. Diagnosed at 25years old, now I'm 46 and its still one day at time. I'm still knocking down hurdles and keep GOD in my corner! GOD BLESS YOU!!!
Please refer to: www.godforeye.com
My best friend who is more like a sister has this and I feel so bad
She's also 11
Tisha Holliman my name is John, I was diagnosed with this when I was about 29. I am now 47. for me, without God and the support of my family I don't know where I would be right now. like you said one day at a time. God bless you too.
Stargardt's disease can be effectively treated by nano-grade eye drops. Please browse www.godforeye.com (Testimonials). All glory belongs to God ! God bless you.
i have this, so does my mum. people who continue to live life to the fullest when there are things put in your way (in our case, a massive blind spot!) really inspire me!
Stargardt's disease can be effectively treated by nano-grade eye drops. Please browse www.godforeye.com (Testimonials). All glory belongs to God ! God bless you.
回覆
I have Startgardts as well, though I was showing symptoms in elementary school with no prior family history related to physical disorders (aside from the common ones, I.e. cataracts). And I was diagnosed at the very end of 6th grade, only having the summer to adapt to basically a whole new way of living before middle school. I have only been diagnosed for 3 years now, and it is no where near as bad as the woman shown in this video, but I think that is it important (lol idk) for me to share my story.
In terms of what I see, I have my blind spots clustered in my central vision, with may colorations ranging from pink to blue to yellow. I have discolorations, like an almost transparent sheet of colored paper (usually pink or purple) that (or course) effects the way I see color. On top of that I experience distortions that are similar to the way a fan spins- it’s hard to explain in words, but it’s like even when I’m looking at something still it appears to be moving, even the colors I mentioned earlier moving like a sort of kaleidoscope when I have my eyes closed. (It’s hard for me to sleep lmao wonder how I got insomnia haha). For some reason my brain tries to fill in spaces by making them seem blurred when glasses don’t help any. My night vision also being shit because of this doesn’t help lol.
I have a cane and digital devices to help me, and I am working with DoR to help me with my future, so that’s not a problem haha.
I think it’s the fact that my eyes on the outside don’t look any different than anyone else’s that makes me paranoid, like in middle school I didn’t like using my cane because I didn’t have it the year prior, I don’t show any physical signs of anything being wrong, and the fact that yknow, middle school cane shame lol
I hope this can at least help one person somewhat understand what it’s like :) thanks for listening to my ted talk
i have the same , my scotom, or blind spot . is full of print , , for your study if i have one advice to give it would be to stay healthy the most you can , practice sports , practice agressive inline skating for many years and it give me strenght and better state of mind .
We have more info on Stargardts disease on our website- www.mdfoundation.com.au/content/stargardts-disease
Plainly somebody who explain star guards the same way I see it. Most people say a black spot in the middle however I describe it more as several firework shows merge together in sped up that play constantly in my center mission. Making it hard to fall asleep sometimes. Peripheral vision is not clear enough to read with drive with or avoid obstacles with.
I was involved with someone who had Stargardts. I met him while volunteering at a housing complex for the blind and visually impaired..He was very handsome and physically fit and because of this he refused to use his support cane at times especially when he went to his childhood neighborhood to see his family because he didn't want the community to know about his condition.He would bump into many people and also poles in the street not having his cane. This is in NYC so hes very lucky he didnt end up in a fight. He needed help with having his mail read and buying groceries and at the laundromat and I didnt mind this but he was super angry and paranoid . I felt more like a home health attendant then a girlfriend so I just stopped talking to him all together because of this. Its nice to see a story about people who can effectively deal with and thrive with this affliction because I know it's not easy.,
So proud Alicia! Great video to inspire others.
My mum has this 😔
Please refer to: www.godforeye.com
I can relate to your situation ..I also have a stargardts disease since I was 10 years old. ..
@@davidlo168888 why you did that dont lie!
@@leekey6065 Don't disgrace God. All statements should be evidenced base.
Please don't make any bullshit statement here.
@@davidlo168888 Using people's emotions and vulnerability to get money. People like you are twisted, let's hope this doesn't happen to you or one of your loved ones.
@@andresvillanueva5421 You shut up because you don't know nano-medication at all.
Don't hurt my good reputation. Up to now, Stargardt's patients who have been
treated by God's mercy nano-grade eye drops can restore their vision.
You're bullshit indeed. Go to the hell
i have also stargard
I have stargardt bj7t what I need is the support on dealing with my profession as a college professor
Some Stargardt's patients treated by God's mercy, i.e. nano-grade eye drops, are greatly improved
their vision and they're so willing to be the witness so that other Stargardt's patients can
be coveted by God's mercy too.
Please browse www.godforeye.com or contact: service@lorati.com.tw
All glory belongs to God !
God bless all of you !
how was your condition right now how you treated your self
Hey r u also having this disease...i really need help
Plz help