there is discovery / a ray of hope since the we r able to grow stem cells /cells of retina
i.e the cells which can later replace the defective cells , and also there is also gene therapy
i.e to change the defective genes which is responsible for this condition..but for the treatment for practical application and to bring it for public..will take some time..
so its my advice to get all the family members screened for the condition, get the genetic typing of the chromosomes..so that the exact defect and which genes r defective can be studied..go for genetic councilling by microbiologist, before and after marriage so that the couple should not have the same disease in any form, and since x linked character in this disease..one can avoidmale child in which the expression of this disese would be more severe..
thanks to a science called genetic engineering
..but lots of more work has to be done..
in last u must go for occupational and physiotherapy
..in advance so that later on ..whn yr vision will go down u can earn yr livelyhood by doing some work and earn some money evenif u hv some vision problem..