Living with Stargardt’s disease: highlighting rare diseases on 28 February
Original article on londonvision.org
Odette Battarel, Head of London Vision South East, has written a blog to mark this day sharing her own experience of Stargardt’s disease.
Named after Karl Stargardt, a German ophthalmologist who first described the disease in 1909, Stargardt’s disease is an inherited form of juvenile macular degeneration. It causes progressive reduction in the central detailed vision, usually leaving the side vision is relatively unaffected.
Common symptoms of Stargardt disease are grey, black or hazy spots in central vision and an increase in the amount of time eyes take to adjust to changes in light, such as from light to darker environments. People with Stargardt disease may also find that their eyes become more sensitive to bright light particularly, and in later forms of the disease, colour blindness can develop.
Currently there is no effective treatment for Stargardt disease, but there is research ongoing, including investigations around gene therapy and stem cell research. It is hoped that an effective treatment will be developed as a result of this research in the future. While Stargardt disease does cause significant problems with central vision, most people retain most of their peripheral vision and as a result do not lose their sight completely. Making things bigger, using bright lighting or different colours can help people with Stargardt disease make the most of their remaining vision.
“I first came to London in the mid-1980s from France to work as an au pair, which allowed me to spend my evenings taking part in dance classes at the London Contemporary Dance School. However, after a couple of years in the capital, I began to see bright sparkly spots in front of my eyes and strange bright purple flashes. These visual problems eventually got so bad that one day while waiting for the Tube, I realised I could not see the destination of the train on the notice board. After being sent to the eye clinic at St. Thomas’ Hospital I was diagnosed with having Stargardt disease.
Stargardt disease is a bit like Macular Degeneration in that it affects the central vision; it means I can’t recognise people’s faces, or see my own in the mirror, and I need quite large letters to be able to read. I have learnt how to do eccentric viewing, which is turning my eyes sideways to bring my good peripheral vision in the middle; the vision is not as clear or sharp, but it does help. Technology has been really important since my diagnosis. Day to day I use a hand-held magnifier to read, a monocular to read bus numbers, voice over on my mobile phone and SuperNova on my laptop. Assistive technology and other adjustments means that I am still able to work and take part in many activities I enjoyed before my diagnosis – this includes visiting museums and enjoying audio described tours, dancing and oil painting.
Assistive technology has helped me at work and to take part in cultural events but it can’t really help with social situations. Not seeing others is very hard; it means you often fail to greet people you know or hesitate to start conversations with others. Being unable to see facial expressions and body language makes socialising difficult. I still really enjoy dancing and while I can follow my partners it is very hard to see when someone invites you to dance with a small gesture of the hand or a nod of the head. I continuously try to teach people around me to introduce themselves, to let me know who they are and to bring me back to my seat after a dance!
About 10 years ago I discovered Metro Blind Sports and through it was introduced to blind tennis, tandem riding and cross-country skiing. This helped me find a brand new network of friends and I have taken part in many tennis competitions and even did the London Prudential Ride 46!
When I was first diagnosed with Stargardt’s disease I was devastated, and really felt that all my dreams were lost for ever. Due to my diagnosis, I have never driven a car and the last book I read was in 1992. At that point I had no idea what might be possible for me. But thanks to a positive attitude, resilience, technology and the support from friends I am now full of new dreams and feel I can continue to learn, grow, and enjoy life to the full!”
Article by Odette Battarel