Retinal degeneration is most commonly inherited in a recessive form. This means that there is no history of vision loss in the family and consequently no idea of what the future holds, for the affected person or the parent of an affected child. The normal steps of grieving for severe loss are often experienced.
Doctor shopping is common, hoping that you have been mis-diagnosed.
Faith healers and quacks are often sought for a miraculous cure.
Against God or your parents is common. In the case of parents of an affected child this anger often turns to blame- blaming each other for carrying a gene for retinal degeneration
this is often a serious and recurrent side effect of vision loss.
Only once this has been achieved can you take control of your life again.
With continual vision loss aspects of this grief cycle are often repeated and professional help should be considered.
In Age Related Macular Degeneration, depression, sleep deprivation and visual hallucinations [Charles Bonnet Syndrome] are often experienced but not discussed by patients, afraid of being judged mentally as well as visually impaired. Eye care professionals are generally not aware of these side effects of AMD.
A special needs child can often place great strain on the other family members with devastating results. Unexpressed feelings of guilt, blame and fear can sometimes lead to divorce, delinquency in affected children or siblings and a general breakdown in family communication. When a spouse is diagnosed the healthy partner often feels inadequate to cope with the extra burden and walks away from confronting this fear. Family counselling before this happens will avoid these extreme reactions. After the diagnoses of retinal degeneration even one session of counselling can help to establish open and honest family communication.
A child with retinal degeneration needs to be parented very wisely. Do not over-protect the child or let them use their loss of vision as an excuse for not fulfilling their potential. Also be sure not to neglect the other siblings, ensure that their lives are not overwhelmed by the needs of the RD child.
The greatest gift you can give your special child is a good self image and a belief that with dedication and perseverance he can reach for the stars.