5 FAQs about Stargardt macular dystrophy

Stargardt macular dystrophy (or Stargardt disease) is a genetic eye condition that causes progressive central sight loss. It is a consequence of progressive damage to the macula.

1. How does Stargardt macular dystrophy affect vision?

Like age-related macular degeneration, Stargardt macular dystrophy affects fine detailed vision, so everyday tasks such as driving or distinguishing faces may become difficult.

Symptoms will slowly worsen over time. As they usually maintain their peripheral (side) vision, it is rare for someone to become completely blind. However, most people with Stargardt disease will experience severe sight loss that affects their daily lives.

Read more in our A to Z of sight loss conditions.

2. How common is Stargardt macular dystrophy?

The condition is estimated to affect between one in 8,000 to 10,000 people in the UK.

3. Is Stargardt macular dystrophy genetic?

Yes. Stargardt disease is an inherited genetic condition. So, it is passed from parent to child. It is caused by faults in a gene known as ABCA4. 

There is a one in 4 chance that a child will inherit Stargardt macular dystrophy. The impact on individuals and their families is significant.

We welcome Gemma Owen as our young ambassador to raise awareness of Stargardt macular dystrophy. Sight loss is close to the heart of Gemma and her family (she is the daughter of football legend Michael Owen).

Gemma’s brother lives with Stargardt macular dystrophy.

Gemma, an international dressage rider, business owner, and TV personality, is keen to use her profile to raise awareness of sight loss.

4. How is Stargardt macular dystrophy diagnosed?

The signs and symptoms of Stargardt disease typically start in late childhood or adolescence and will gradually get worse over time. A loss or change in central vision will lead to a diagnosis.

5. What treatments are available for Stargardt macular dystrophy?

Unfortunately, there is currently no cure for Stargardt disease. However, there is a lot of ongoing research into potential new treatments – including gene, stem and drug therapies.

Much of this work is being funded by Fight for Sight. Recently, we awarded £1.2 million to accelerate innovative projects into sight loss. Part of that funding we awarded to Professor Omar Mahroo of the University College London Institute of Ophthalmology. Professor Mahroo aims to develop an innovative gene therapy for Stargardt Macular Dystrophy.

Listen to this episode of the Fight for Sight podcast in which Professor Robert MacLaren discusses potential gene therapies for Stargardt macular dystrophy.