Toolkit: Social and Emotional
![star 40 blue star](https://stargardtsconnected.org.uk/wp-content/uploads/2019/02/star-40.png)
Diagnosis of Stargardt’s typically happens between the ages of 10-20 although it can happen when younger or older. A diagnosis can feel like a grieving process for the Child / Young Person and the family.
Families can often feel a sense of shock on diagnosis. This is because being a rare condition, they may have never heard of the Stargardt’s before. In addition the CYP would not have been born with sight loss and the family are having to adjust to this new way of life.
The progressive nature can mean the CYP and family are facing the unknown as are unsure when and how the vision will be change. This undoubtedly will cause anxiety as will need to review new skills.
As well as adaptations for the school, there are a lot of adaptations needed to consider for the CYP and their family. The progressive nature of the condition can cause anxiety and the constant need to review the needs of the child as well as the CYP having to learn new skills.
In their own words
Losing your sight after what you believed to be a fully sighted childhood is huge. It is an enormous adjustment and can really rock your sense of who you thought you were and who you believed you were always going to become. Be prepared to lose both confidence and motivation at times throughout your sight loss journey
Having a bank of phrases which I can easily use to explain my condition has made it so much easier to let new friends know.