Living and Working with Stargardt’s Disease:
Inspired to Thrive: Alicia’s Story
Date: December 10 2015
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.
The Foundation has produced a short video featuring Alicia, documenting her inspiring and positive approach to life and her use of innovative technologies to navigate the challenges of work, home and leisure. The video can be watched at www.mdfoundation.com.au.
ABOUT THE AUTHOR:
Video: Alicia’s Story – Stargardt’s Disease
About Macular Disease Foundation Australia
Macular Disease Foundation Australia is committed to reducing the incidence and impact of macular disease in Australia through education and awareness programs, research, provision of support services and representing the best interests of the macular disease community. The Foundation is a national charity providing information, guidance and support on prevention, early detection, treatment and rehabilitation. The Foundation is the voice of the macular disease community, building healthy communities through the development of effective public policy, a sound knowledge base and strong relationships and partnerships. The Foundation’s work encompasses macular degeneration, diabetic retinopathy, retinal vein occlusions and a range of other macular diseases.
To find out more visit: www.mdfoundation.com.au
About Stargardt’s Disease
Stargardt’s disease (also called Stargardt’s macular degeneration or Stargardt’s macular dystrophy) is a rare inherited eye condition which affects the central area of the retina called the macula. It is also sometimes called fundus flavimaculatus. It affects about 1 in 10,000 people. Stargardt’s disease is sometimes called a juvenile macular dystrophy since it tends to first appear between the ages of 10 to 20 although visual impairment may not be apparent until the age of 30 to 40. Stargardt’s disease causes parts of the macula to stop working, leading to problems with central vision, detailed vision and sometimes with colour perception.
To find out more on Stargardt’s Disease visit www.mdfoundation.com.au/resources/MDFA_Stargardt'sDisease_Factsheet_web.pdf