Stargardt Disease – Information and Support
Stargardt disease effects the eyes and causes vision loss in children and young adults. Stargardt disease is the most common inherited single-gene retinal disease. It mainly affects your macula, the light-sensitive layer at the back of your eye which is a part of your retina.
How does Stargardt disease affect sight?
Stargardt disease can also be referred to as juvenile macular dystrophy due to the fact it commonly presents itself in childhood. It is important to note that Startgardt disease can also begin later in both young and late adulthood.
The first symptoms of Stargardt disease are unclear or blurry vision. Things may sometimes appear distorted or wavy. You might develop problems with your central, detailed vision which can make activities such as reading and recognising faces difficult. Colour perception may also be affected. Early on, you may notice some difficulty with reading and other problems with central vision, such as blind spots, and these may increase over time.
The rate of progression and visual loss varies from person to person and even among affected members of the same family. Therefore, it can be difficult to predict what an individual’s vision will be like at a specific time in the future.
How I see? The Blind Life
Diagnosed at age 11 with Stargardt Disease, American YouTuber and host of channel The Blind Life, Sam answers the question; “How do you see?”.
Having lived with the condition for 30 years, Sam explains how he manages his vision loss.
The causes of Stargardt disease
Stargardt disease is caused by a mutation in the gene called the ABCA4 gene 5. This mutation can also cause some other retinal diseases like retinitis pigmentosa and age-related macular degeneration. This gene plays a role in how the body uses vitamin A to create cells in the retina. When the ABCA4 gene is affected, it leads to the accumulation of fatty material on the macula which results in poor central vision.
Helpful links and organisations
Stargardt’s Connected
A UK based charity that aims to raise awareness, give support and to help with progress towards a cure.
They provide information to families affected by Stargardt’s, signpost them to available support and inform them of the latest research. They also promote a Stargardt’s community which they hope will assist in driving essential research forward.
Click here to find out what ways they can support you
Click here to find out about the latest research.
Click here to sign up to the community register.
Click here to find out genetic information.
RNIB
A national UK based charity that supports both children and adults with a variety of sight loss conditions. They have a comprehensive page about Stargardt disease, covering the different types of the condition, how it can effect sight, how it can be managed and coping.
Click here to find out more information about the condition.
Click here to download the ‘Stargardt Disease’ factsheet.
Click here to download the ‘Making the most of your sight’ booklet.
Retina UK
A UK registered charity supporting people affected by inherited sight loss and investing in medical research to help make their challenges a thing of the past. They focus on inherited sight loss conditions that occur when cells in the retina, which is the light-sensitive region at the back of the eye, deteriorate in an unpredictable way. These conditions are often referred to as inherited retinal dystrophies.
Click here to find out more about news and events.
Click here to find to make a referral into the organisation
Click here to find out more about the emotional well being support they offer
The Macular Society
A UK based charity that supports people of any age who have a macular condition. They aim to beat any types of macular related conditions. And offer support to people who are living with the condition. They are trusted for their supportive, open and collaborative approach, our professional expertise and dedication.
Click here to find out more about early diagnosis support
Click here to find out how to access one to one support
Click here to explore the research projects they are involved with
Connect with other parents and find support with VICTA
Join the VICTA Parent Network – with almost a thousand members! You’ll find parents who have vision impaired children of all different ages and with various eye conditions. You can use the group to ask questions you may have and connect with parents of children with shared conditions or from your local area.
Visit the support section of the VICTA Parent Portal here to find out about support groups, both in your area and online.
VICTA activities
VICTA is a national charity supporting children and young adults who have a vision impairment from 0 to 29 years. We have a calendar of fun and engaging activities across the year to help young people make friends, grow in confidence and gain the skills they need for an independent future.
Visit the VICTA activity calendar >
Stay up-to-date with VICTA’s news and latest activities on social media @VICTAUK.
