We are planning a Stargardt peer support group to launch in spring 2024. If you are living with Stargardt disease we would love to have you join us.
Stargardt Disease, also known as fundus flavimaculatus, is an inherited retinal degeneration which causes progressive loss of vision as a result of damage to the central region of the retina known as the macula. The macula contains photoreceptor cells known as cone cells, which are responsible for fine, detailed, central (reading) vision and for colour vision.
This condition, in turn, leads to a loss of central and colour vision, but peripheral (side vision) is usually preserved. Stargardt Disease can be variable in that the age at onset and rate of progression of vision loss can differ between individuals.
It is the most common form of inherited juvenile macular degeneration, with a prevalence estimated between one in 8,000 and one in 10,000 people. The carrier rate has been quoted as high as 1 in 20 to 1 in 50 people.
Receiving a diagnosis can be overwhelming for anyone. You may have feelings of sadness, anger or anxiety relating to your situation and this can affect you and your family on a regular basis. During these times, many people find it useful to talk through their feelings with someone outside their usual circle of family and friends, and often by meeting with others who have faced similar difficulties, vital support can be found.
Time: TBC, starting in spring 2024
Venue: In person at the Fighting Blindness offices, 7 Ely Place, Dublin 02.
How to get involved
If you think this may be of interest to you or someone you know, please contact us on 01 674 6496 or email email@example.com.
We’ll be happy to answer any questions you may have about the group, and it will also give us the chance to get a sense of your support needs and what kind of service you feel would be helpful.
Please note that this is not formal group therapy.