Stargardt disease affects the macula, which is responsible for central vision, and in more severe cases affects the fovea at the center of the macula, which helps people see fine detail. There are many areas of daily life affected. It impacts a person's ability to read and write, drive, recognize friends, and engage in other daily activities.
Stargardt can be especially difficult for children and teens when they are diagnosed, as they seek more independence as they mature. Stargardt can profoundly affect the lives of individuals living with the condition, as well as their families. It's important to recognize the unique challenges they face, and provide appropriate support.
I’m scared of being
called on in class.
— 12-year-old with Stargardt disease
We don’t want him to lose the chance to reach his goals.
— Parents of 22-year-old with Stargardt disease
Living with Stargardt
Stargardt disease impacts many areas of life—but support is available.
Although there is no cure for Stargardt disease, there are ways to help manage daily life with the condition. Consider the following:
1
Speak with your doctor about
decreasing vitamin A in your
diet and/or discontinuing
vitamin A supplements
2
Quit smoking and/or
avoiding secondhand smoke
as much as possible
3
Use sun protection,
such as sunglasses and hats,
to reduce exposure to
bright light
4
Explore assistive resources that
can help with school, work, and
the activities of daily life
5
Learn about resources
available for mental health
support, as needed
6
Visit a genetic counselor to
discuss family planning
Genetic Testing
Following a diagnosis of Stargardt disease, ask your eye care specialist about genetic testing, which checks for genes known to be responsible for inherited eye diseases and/or specifically Stargardt. The option to undergo this testing can help confirm a diagnosis of Stargardt disease and may also help you or a loved one qualify for a clinical trial. Whatever you decide, it’s an important decision that should be made together with your healthcare team.
It’s also important to know that people with Stargardt have a normal life expectancy; the loss of vision does not impact general health.
Research
Multiple clinical trials are underway for Stargardt disease, and research for inherited eye diseases may also impact this condition in the future.
Ongoing trials continue in the study of Stargardt disease, from the biology and genetics of the condition to retinal diseases in general that can help inform treatment. To date, no FDA-approved treatment exists, but knowledge about the condition continues to advance.
