WHAT IS STARGARDT’S DISEASE?
Stargardt macular degeneration is a genetic eye disorder that causes progressive vision loss. It was named for the German ophthalmologist Karl Stargardt, and may also be called fundus flavimaculatus.
This condition affects the retina, which lines the back of the eye and is composed of many layers. One layer of the retina is the retinal pigment epithelium (RPE). In people with Stargardt disease the RPE collects a substance called lipofuscin, which can lead to vision problems. Reference: www.kellogg.umich.edu
Vision loss in Stargardt disease is most intense in the macula, which is in the center of the retina. Stargardt disease is part of a group of diseases affecting the macular region of the retina, called macular degenerations. Stargardt’s disease is sometimes called a juvenile macular degeneration because it often appears at an early age. Reference: www.kellogg.umich.edu
Additional information about Stadgardt Disease can be found here:
SYMPTOMS
Stargardt disease chiefly affects the macula, which controls central and detailed vision. A person with the condition may have reduced visual acuity, causing blurry vision. A first sign of Stargardt disease may be trouble reading. Blind spots can occur. At first, the size of the blind spot is small, but it may gradually increase in size. Reference: www.kellogg.umich.edu
Additional information about RP symptoms can be found here:
GENETICS
Stargardt’s disease is a condition that can be inherited in families. Genes and chromosomes are the basis of inheritance. For most families with Stargardt disease, the inheritance pattern is autosomal recessive and it is caused by mutations in a gene called ABCA4. Recently a small number of families were found to have an autosomal dominant pattern of inheritance.
Click here for explanation of Inheritance Patterns.
Additional information about RP genetics can be found here:
TREATMENT
While there are no therapies today to cure Stargardt disease, research has revealed clues about slowing its progression.
Despite the lack of treatment for Stargardt disease, general eye checkups are still important. People with Stargardt are still at risk for other kinds of eye problems that may affect anyone in the general population. Some may be treatable with surgery or medications. Regular visits to an ophthalmologist can also make you aware of current advances as we learn more about Stargardt disease and treatments that may help you. Reference: www.kellogg.umich.edu
Additional information can be found here:
RESEARCH
Many research groups are working to develop treatments and cures.
Medical journal articles related to the latest research about stem cell therapy can be found here:
Treating Stargardt’s disease by removing lipofuscin
HOW TO LIVE WITH STARGARDT DISEASE
It may be very hard to deal with a diagnosis of Stargards disease. Many people have never heard of the disease and are unsure of how Stargardts disease will affect them. It is important to realize that most of the time the disease progresses slowly. For the most part, you will not have to learn new skills overnight. People who have Stargardts disease lead successful and full lives. There are people to help you along the way. Many kinds of services are available if and when they are needed.
It is perfectly natural for someone with vision loss to feel anxious, fearful, angry, or unhappy. If your child has RP, it is also natural to have feelings of uncertainty, anxiety, and fear over what the future may hold for him or her. It is critical that you discuss these feelings with your medical team. Support groups can also be very helpful. Reference: www.kellogg.umich.edu
Below are the links to organizations that can provide information about Stargardts disease and about living with low vision.
Booklets about Stargardt Disease:
Understanding Stargardt’s Disease
SUPPORT
Below are the links to the organizations providing disability care and support services to people with impaired vision.
FACEBOOK SUPPORT LINKS
Support groups bring together people facing similar issues. Members of support groups often share experiences and advice. It can be helpful just getting to talk with other people who are in the same boat.
For further information on closed groups in Retina Australia WA Facebook page, Please feel free to contact the office on +61 8 9388 1488 or email to info@rawa.com.au.
