A huge thank you to our medical adviser Professor Michel Michaelides from Moorfields Eye Hospital and Institute of Ophthalmology, UCL who recently joined our Zoom session to give a Stargardt's research update and hold a question and answer session.
Here is the video of the session. Below are the additional questions that were not covered in the session, which Professor Michaelides has kindly followed up and answered.
It is unusual but not rare; partly given the fact that 1 in 20 to 1 in 50 people are carriers for a fault in the gene ABCA4
There are no proven treatments to date. And I am unaware of this being explored directly in inherited retinal disease to date.
There is no evidence to date but patients do describe benefit from various complementary therapies including acupuncture
This is believed to be related to the severity of gene variants in ABCA4, and also other genetic factors – so called modifying factors.
Given the vast majority of patients will have had significant periods of normal vision before marked visual loss (so have developed normal brain processing), we anticipate that the signals will be appropriately interpreted by the brain
The number of people with various mutations is constantly changing. Your daughter's treatment would not necessarily be delayed as many approaches are not mutation-specific, but gene-specific.